Changing face of home-based hospice care

AIDS has accelerated the death rate in Swaziland, causing home-based hospice care to expand into an entire support system for affected families. "People now come to us as a resource to go for help when they have a terminally ill family member, to help them cope with the burden, to help the patient, and to help the whole family emotionally, spiritually and medically," said Thulile Dlamini-Msane, director of Hospice at Home, a care centre near the Matsapha industrial estate outside Manzini in central Swaziland. The country has the world's highest HIV prevalence rate, with 42.6 percent of its adult population infected, according to the health ministry. Fifteen years ago, hospice patients were primarily cancer victims; now a substantial number are HIV positive. "In May, in the Manzini region, we had 1,000 patients; in June, the number had dropped to 800, as some of them had died because of AIDS-related illnesses - but we will be at 1,000 soon, because new patients always replace the old," said Jabulani Gamedze, a senior nurse at the hospice. From what began as a centre serving a few rural homesteads, Hospice at Home has grown into a nationwide network, with nurses located in all four of Swaziland's regions. Well-funded by a host of international donors, Hospice at Home's headquarters has a care centre where patients whose caregivers are at work during the day can rest and receive meals and medicine. "My dream is to open a night-care facility - this would free families to attend night-time prayer vigils before funerals, or take trips and much-needed breaks from the 24/7 task of tending their terminally ill relatives, who would be staying with us temporarily," said Dlamini-Msane. Institutionalising the terminally ill is anathema in a country where family bonds are strong, and people prefer to spend their last moments at home. "Most patients say: when they die, they want to be at home with their families," said Gamedze. "We treat the whole family - everyone must be prepared for death. The first time nurses visit a homestead, they spend many hours getting to know the situation there - the food, the relatives, the material needs; much of what we do is counselling." To make patients feel more comfortable, hospice nurses do not wear uniforms, while their role has grown from that of dispensing medication to being experts in palliative care, specialising in managing pain. "Through the years, our care has been in total response to patients' needs. Caregivers of AIDS patients told us they feared getting infected through bodily secretions and, indeed, some of them were getting infected. Now our donors are providing adult diapers, rubber gloves and other essentials," said Dlamini-Msane. An initial rapid response HIV test is administered in the patient's home, and if the results suggest an infection, the standard blood test is conducted at hospice headquarters in Matsapha. Hospice care now also emphasises disease prevention among other family members. "When a patient is HIV positive, we encourage the spouse and caregivers to get tested," said a nurse at the Matsapha daycare centre. "We administer to the patients' spiritual needs, encouraging them use religion or make contact with their ancestors," said Gamedze. "The entire family is counselled, and we work on their emotional needs in the face of death."