While world attention focuses on reducing the spread of HIV-AIDS, experts in palliative care say that it's also essential to address the needs of the millions who are dying often agonizing deaths due to AIDS-related illnesses. American hospices are leaders in relieving pain and enhancing the dignity of people with terminal illnesses. Through the Foundation for Hospices in Sub-Saharan Africa, some hospices in the United States are offering more assistance.
It's a busy day at the headquarters of Hospice of Metro Denver, which provides pain relief, respite care and counseling to 2,500 terminally ill clients every year, along with 8,000 of their family members and loved ones. While most of its clients live in Denver, the hospice also has a close relationship with a hospice nurse based in Tanzania - sister Paulina Nateyma.
"The reason we call her Sister Paulina is that in Africa, nurses are called nursing sisters, and so you call them Sister Paulina," says Denver hospice president Bev Sloan.
Mrs. Sloan has visited Sister Paulina, bringing money, blankets and medications. "They don't have lots of kinds of fancy medicines in Tanzania, which is a very poor country. I think the average annual income is about 326 dollars per year, so every dollar we send goes a very, very long way," she says.
When Hospice of Metro Denver arranged for Sister Paulina to visit Colorado, Ms. Sloan says that everyone was inspired by her expertise and dedication. "Paulina has trained nurses and physicians from 15 different parts of Tanzania about how to start hospice and how to be good clinical caregivers," says Ms. Sloan. "She says, 'we walk. We walk. That's how we get to patients.'"
But the number of patients to reach is overwhelming. Every day, 6,000 Africans die from AIDS-related diseases. Each of those deaths adds to the continent's devastation, according to Bernice Catherine Harper, a leader of the American hospice movement.
"You know what one death does to a family, right? In terms of the emotional impact. When you contrast this with the number of people dying in Africa daily, it's just overwhemling and tremendous," says Ms. Harper. "The people in Africa get to feeling that their country is dying."
Pain can make a death even harder to bear, which is why relieving pain is a major part of hospice care. While Africans have a long tradition of caring for their own, Ms. Harper says assistance from American hospices can make a difference. "A person is a person," she says. "If you can control pain in America, you can control pain in Africa, if you have the right medications and treatment modalities and what have you."
So Ms. Harper started the Foundation for Hospices in Sub-Saharan Africa. Once the foundation has verified that an African hospice is run by a legitimate agency, it helps identify a partner hospice in the United States. Ms. Harper's efforts recently gained the endorsement of the National Hospice and Palliative Care Organization, which counts among its members 80 percent of America's 2,400 hospices.
"I really do encourage people to support organizations like the Foundation for Hospices in Sub-Saharan Africa," says organization spokesman Jon Radulovic. He says the group addresses a crucial humanitarian need. "They're going into a place that we only read about in newspapers… into nations that are suffering in ways that we can't imagine."
Through the Foundation for Hospices in sub-Saharan Africa, two dozen hospices across the United States have signed up to assist an African counterpart. Hospice of Metro Denver's president, Bev Sloan, says that visits with Sister Paulina in Tanzania have opened her eyes to the crisis there.
"I've seen nurses go out that had no medicines. What they might be taking is food. What these people most often need is that, they're starving, they're hungry. So part of the thing the nurses take with them is a meal, or food for the next few days, and that really helps the health and the comfort of the people that they're caring for," says Ms. Sloan. "The compassion is an incredibly power thing, and once you've felt it, it hooks you and you just want to go back and do what little you can to spread that powerful spirit."
African hospice workers are well-known for dealing with terminal cases of cancer and tuberculosis. So they can visit people dying of AIDS-related illnesses without broadcasting the nature of the disease. That's important in shantytowns and rural communities where the fear of AIDS leads many to ostracize those who are infected. What's more, Ms. Sloan adds, in the privacy of a family home, hospice workers can share information about stopping the spread of HIV.
"They do a lot of education about safe sex, with the children and teenagers that are there, how to care give to the other relatives, and start breaking down that ignorance that is such a barrier to preventing the further spread of AIDS," she says. "Ironically, hospice workers are probably on the front line of prevention."
Ms. Sloan says that a small amount of effort goes such a long way, she's already planning her next trip to Sister Paulina's hospice.
