The dying are forgotten as Tembisa hospice faces closure
The Arebaokeng Hospice attends to the sick and dying, and is the only palliative care facility in the sprawling township
Letty Masinga clutches the blanket that covers her in a desperate and futile attempt to escape the pain from cancerous tumours choking her organs.
The 42-year-old Tembisa woman, bedbound from the blinding agony, is one of 64 people facing death without care after the closure of the Arebaokeng Hospice, the township’s only palliative care facility.
“Sometimes I just wish I could die. I don’t sleep, and the constant pain means I hardly eat, so I must just lie here because actually this is all I can do,” she said.
The hospice, established in 2001, provided home-based care for the infirm and had a six-bed ward for the critically ill in the final stages of their lives.
But a dearth of funding forced the closure of the ward in July 2018, with any money for home-based care – key in providing pain management and nursing – drying up this month.
Founder and hospice nurse Florah Modiba said the ward was opened in 2016, and with annual funding of R1.8m from the largesse of donors, staff salaries had been covered. It was closed, she said, because funders had grown unhappy with the poor rate of patient turnover.
“We had patients who were forgotten, and we landed up stuck with them. Some didn’t have homes of their own, and others were staying with relatives who didn’t want them back. We couldn’t throw them out, and our funders, who paid for salaries of the staff and caregivers, were concerned that we were not making an impact because we were holding on to these people for a long time,” she said.
“Patients should come in and then leave, and that was not happening, but there was nothing we could do. When they withdrew, we lost our funding, and that put our home-based care programme to the sword,” the 74-year-old nurse added.
Without the cash injection, caregivers and nurses were laid off, with a skeleton staff remaining to provide home-based care.
“We have limped along for a year without funding. We had a little bit of funding from the national lottery and some others, and that kept our heads above water to pay salaries, but now it’s dried up. We’ll be forced to close our home-based care,” she said.
Modiba, who still visits her patients, said providing hospice care in the township setting had a complex set of challenges.
“With white hospices, you’ll find retirees coming to volunteer and they don’t need money. They go and help and while away their time. The patients also have medical aid, so they can bill and be paid. Our patients have nothing; some have never worked, and most have never even had the notion of a medical aid. Their families are hungry already, so I can’t ask them to pay, or for donations.”
“The people who desperately require our home-based care in Tembisa are left with nothing,” Modiba added.
Another feeling the loss of the closure of the in-patient ward is teacher Busi Ngwenya, who spends her days in front of a chalkboard and her nights awake, nursing her dying and bedridden aunt.
Busi Dube, in the final stages of cancer that has spread from her ovaries to her lungs and spinal cord, needs 24-hour care.
“During the day we have a carer who looks after her. At night I am the one who is with her because I am all she has. I don’t sleep when I am with her because she calls for me when she’s in pain and when she wants to be turned,” she said.
“This has been my life for three months, and I am battling. I don’t see my family, and I am so fatigued at school because I am constantly awake. I also struggle to be present in class because I am always waiting for the call to tell me she’s gone,” Ngwenya added.
Arebaokeng’s now-closed ward also served a “family-respite” function, temporarily admitting the gravely ill to give their relatives a break from constant care.
Sharon Carter, of the Hospice and Palliative Care Association, said eight hospices had had to close their in-patient wards because of a lack of funding in 2018.
“Many of the hospices have had to retrench staff and restructure the remaining staff. Due to the dedication of many of the staff, some are working either for minimal salaries or are volunteering their time to keep their services going in their communities. Several hospices are on the verge of closing their doors due to funding constraints,” she said.
She said SA hospices attended to 100,000 people every year, who would otherwise be abandoned by the health system, with families expected to provide the care without professional advice and support.
Carter added that while the department of health developed a policy framework and strategy for palliative care, it was done with no mind for funding.
Health department spokesperson Lesemang Matuka and social development department spokesperson Thebe Mohatle did not respond to repeated requests for comment.
With their donations exhausted, all Modiba has to offer is her time.
“It’s hard to see people suffering. Over the years I have learnt to handle it, but the younger caregivers take strain. We often feel very helpless, and more than the pain, it is hard to see these people when they are hungry. I feel like buying food for them, but that is not something a hospice does,” she said.
“These people are forgotten by their own communities,” she added.