Walking Away From Death’s Door

The young man lay on what everybody thought would be his deathbed in Soweto’s only hospice.   We will call him Tshepo” (not his real name).  While serving a jail sentence for a minor registration offence he was molested and contracted HIV.  Prison hospital care was poor. Tshepo’s hands got gangrene, so eight of his fingers were amputated. The 28-year-old was released but he didn’t know where to go or what to do.  Somehow, he found his way to Soweto’s Hospice, known to care for those at death’s door.

Hospice staff helped the ailing man with medicine and access to antiretroviral treatment (ART).  They offered him a bed and gave him healthy meals, proper medical care and counseling.  That was three years ago.  The medication, care, support and his own determination have saved Tshepo’s life.

Ella Danilowitz, of the Hospice Association of Witwatersrand responsible for the Soweto branch, reported: “Tshepo is okay now, showing no symptoms of HIV.  He is learning to feed and wash himself.  We got a disability grant for him.  He was a Hospice resident, but we’ve discharged him so that he is now in a home care program...he is healthy, chirpy and looking for work.”

The Hospice has evolved from a place for those inevitably going to die to a life-saving program.

Ella explains, “We are trying to get patients to a healthier physical state so they can return to be homemakers and parents of their families.”  USAID, through the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR), support Soweto Hospice to expand the care available for patients at home.

Soweto Hospice can access AIDS treatment and has trained caregivers who are helping to rehabilitate patients.  Staff members administer medicine, help patients manage their pain, observe patient progress, and step in to treat any side effects.  Ella reports, “Of 1000 homecare patients last year, between 20 and 30 people died a month at home or in the patient unit.”  Despite the country’s AIDS epidemic, Ella says, “This year, it looks like the death rate is going down.”

The Soweto Hospice has developed the country’s first pediatric palliative care ward.  Ella calls the homecare program that USAID and PEPFAR support “the core of our activities.”  Caregivers find children in homes who desperately need the help that the Hospice can provide through a comprehensive program that addresses homecare, preschool, hospital admissions, rehabilitation, and return to society.

The Hospice links nearly 100 children to a nearby nursery school.  Ella said, “They would have been disadvantaged; they are the children of our HIV and AIDS parents in our community.”  Homecare staff monitors the children’s health, ensure vaccinations, and treat any sicknesses.  According to Ella, at least 25 percent are likely to be HIV positive, with high Tuberculosis (TB) co-infection.  Children receive food to eat with their medication and, along with families, are educated about TB and AIDS prevention and treatment.

USAID has supplied a bus for Hospice staff to visit homes and transport children from school to their homes.  The Soweto Hospice has made immense progress this year, moving out of a structure made from metal shipping containers into a brick building.

Hospice’s work has also shifted.  Many patients are recovering after receiving Hospice staff’s professional attention. Many, like Tshepo, who arrived at Soweto Hospice to die, are waving good-bye to the dedicated staff that are glad to see them walk off the premises alive.