Dying of the light: Hospices can’t
Hospice isn’t just a place to die but funding cuts — and that perception — could be killing our chances of a kinder death as refuges close
The morning sun cuts through half-open blinds and filters into a deserted ward at HospiceWits, the Soweto branch. Outside, the August wind chases dust around the property.
The rays illuminate a room with five single beds. Bright orange curtains — once drawn to give patients and their families privacy — are roughly knotted or draped over the rails around each bed.
Against the wall above a small porcelain basin, a frozen clock reads 12:40.
It’s been like that for more than a year.
Hlengiwe Dikeledi’s footsteps echo as she leaves the empty 16-bed unit, which closed its doors in July 2017. She is the palliative care manager at the Soweto hospice
“We had to retrench more than 20 people,” she says, making her way back to her office. “Nurses, cleaners, cooks. Everyone had to go.”
Her office is a small room in what was once an eight-bed paediatric unit — a pastel-coloured paradise. The walls are decorated with handpainted songbirds and veld flowers.
Funding troubles forced the children’s unit to close a year before the adult ward suffered the same fate.
The Hospice Palliative Care Association (HPCA) and its member organisations provide more than 100 000 patients each year with palliative care, helping them to manage the pain associated with chronic or life-threatening illnesses such as cancer. But palliative care is about so much more than what hurts physically: it also supports patients and families psychologically — and even spiritually — to cope with illness and die in a humane way.
Hospice workers mainly provide care in patients’ homes. But inpatient units such as this one south of Johannesburg are important for people who need extra help, for instance, who may be living with a number of illnesses and who rely on a multitude of hard-to-manage medicines.
For others, brief stays in hospices can give family members a respite from the 24-hour care many patients need, says chief executive of the HPCA in South Africa, Liz Gwyther.
But the Soweto hospice and over 50 other facilities nationwide were dealt a crippling blow when one of its biggest international donors, the United States President’s Emergency Plan for Aids Relief (Pepfar) reduced its funding by 40% in 2014.
Non-profit hospice services took off in South Africa in the 1980s, catering largely for people with cancer and HIV in the era before treatment.
As of March 2018, just over 4.2-million people in South Africa were on antiretrovirals (ARVs), according to a department of health presentation to Parliament.
But as more people start HIV treatment and live longer, the US government’s funding focus has gradually shifted away from in-patient hospice care towards improving HIV treatment. Aids-related deaths have dropped by almost 60% since the government began to roll out free ARVs in earnest in 2007, 2018 Statistics South Africa data reveals.
By contrast, the national cancer registry shows a 30% increase in cancer cases between 2010 and 2014.
More than 60% of patients seen at the HospiceWits were there because of a cancer diagnosis.
But after Pepfar support decreased, the township’s only hospice couldn’t raise the R5-million in annual funding to continue to treat patients at the centre, HospiceWits chief executive Jacqui Kaye says.
“To care for our patients, HospiceWits has to source R32million in funding each year.” Ndimande’s head. Dlamini puts a soft plastic ball in 66-year-old Ndimande’s hand to practice her