Hlengiwe Dikeledi’s footsteps echo as she leaves the empty 16-bed unit, which closed its doors in July 2017. Bhekisisa reports that 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 hand-painted songbirds and veld flowers. But, the report says, 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.
The report says 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, CEO of the HPCA in South Africa, Liz Gwyther is quoted in the report as saying.
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.
The report says 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 4.2m people in South Africa were on antiretrovirals (ARVs), the Health Department says. 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.
By contrast, the report says, 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 R5m in annual funding to continue to treat patients at the centre, HospiceWits CEO Jacqui Kaye says. “To care for our patients, HospiceWits has to source R32m in funding each year.”
The report says Soweto isn’t the only community to lose in-patient hospice care as funding dries up. Eight-in-patient units around the country have been forced to close and several other hospices are on the brink, Gwyther warns. “We anticipate significant money problems over the next few years.”
Shops selling donated goods, bring in just over R12m per year for HospiceWits. But the rest must be sourced through government, trusts and donations. Gwyther says many corporate donors would rather fund education and social upliftment programmes than health initiatives.
And then there’s the stigma, Dikeledi argues. Community stigma means some families are hesitant to send loved ones to in-patient care. In Diepkloof in Soweto, this meant the hospice had fewer than five occupants since 2015, Kaye says. Without the patient numbers, it’s hard to rally donors for support, Dikeledi admits. “People are still afraid other people will find out that they could have stigmatised illnesses like HIV. “They believe hospice is a place you go to die.”
The report says a new national palliative care policy approved last year would help take care out of stigmatised facilities and into communities with local teams treating bed-bound patients in their homes. Palliative care training will also be compulsory at the country’s eight medical schools. Most doctors are ill-equipped to provide this type of care, Gwyther says. “Doctors are trained to treat the illness, not the person.”
But Gwyther warns that there has been no discussion about how the plan will be implemented – or funded.
Gwyther says she has written to the health minister and the head of the palliative care steering committee and KwaZulu-Natal Health MEC Sibongiseni Dhlomo, offering HPCA’s support in phasing palliative care into everyday running of the country’s health system.
Until then, the report says, hospices will be left to brave the competitive world of donor funding and more families will rely on the country’s struggling palliative care facilities.Bhekisisa report