Caregivers help sick refugees leave in dignity

JOHANNESBURG, South Africa, Jan 8 (UNHCR) - Daniel (not his real name) is wearing his best clothes for the occasion. His shirt and tie are much too big for his body, which has lost a lot of weight. But when he heard he was meeting a UNHCR official, he insisted on being taken out of bed and dressed properly.

The 37-year-old refugee from the Democratic Republic of the Congo (DRC) is terminally ill with a motor-neural disorder. He looks nothing like the sociologist and human rights activist who fled Rwandan Interahamwe groups in the DRC to Burundi and Tanzania.

A long and dangerous journey brought him to South Africa, where his weak health deteriorated rapidly. He is now bed-ridden and paralysed.

Sitting in a tiny room in a flat shared by several refugee families in Johannesburg-Hillbrow, Daniel looks forward to visits from his nurse, Julie. She shares his sorrows, jokes to make him laugh, and breaks the monotony of his days.

"She is my family now," he says as the young woman swirls out to pay his rent. Normally articulate and fluent in French, he has trouble speaking now as his muscles weaken by the day.

Daniel is one of 24 terminally-ill refugees and asylum seekers under the care of a team of home-based caregivers in Johannesburg. Under the project run by the Jesuit Refugee Service and co-funded by UNHCR, the caregivers are refugees themselves - nurses and paramedics whose certificates are not recognised by the South African government. The project allows them to use their skills, earn money and help fellow refugees and needy South Africans who are also benefiting from the scheme.

"Asylum seekers have difficulties accessing health care, and hospitals refuse to give them medicine at affordable rates," says Julie, who has been working with the project for several months. She visits her four patients twice a week, brings them money for food and rent, and helps them with personal hygiene and house cleaning. But most importantly, she provides psychosocial support.

"We talk to the clients, spend time with them and bring them love," says Julie as her colleagues nod in approval. "We know they are going to die, the question is how. We can at least help them to pass away in dignity and peace."

Their job is one that even professional medical staff find hard to cope with. Augustine, the only male nurse in the project, lost one patient just last week. "Since I came here, I've never seen somebody recover," he laments. It is almost impossible to give the patients hope without lying to them.

The caregivers also worry about the danger of infections. Many of the patients suffer from tuberculosis and AIDS, though nobody wants to admit the latter for fear of being ostracised by their communities.

HIV/AIDS is certainly taking its toll. Julie tells of a paralysed patient who kept saying he just had high blood pressure and would recover soon. Only when he was actually dying was he able to acknowledge that he was very sick.

Another patient is a father of six. His wife died of AIDS a few years ago and he is worried about the fate of the children he will soon leave behind: orphaned minors, asylum seekers in a foreign country without relatives or legal status.

Augustine remembers a cancer patient who was 18 years old but looked 55. He never talked about his fate until one day he said, "I am waiting for my last day." That same afternoon the young man's mother called to say that her son had just died.

It is such cases that fall through the cracks of the system in South Africa. A recent study on living conditions of asylum seekers in South Africa revealed that one of their greatest problems is access to health care. Of those respondents who had tried to access emergency medical care, 17 percent had been refused in violation of existing constitutional provisions.

As for non-lifesaving medical interventions, the vast majority of asylum seekers do not have enough money to pay the fees.

The UN refugee agency is continually taking up these issues with health authorities in South Africa, urging them to grant the same assistance to asylum seekers and refugees as to poor South African citizens. But while this problem remains unresolved, the agency is subsidising the home-based care project in Pretoria and Johannesburg to assist the most vulnerable of asylum seekers - the chronically and terminally-ill patients.

UNHCR joined the home-based care project in 2003 with a contribution of more than 180,000 rand (approximately $28,000) for a trial period of six months. But given the pressing humanitarian need, the agency plans to continue funding the project in Johannesburg and Pretoria, as well as to support the development of similar schemes in Cape Town and Durban.