What people don't realise is how expensive it is to die
There is scant thought for patients as palliative care facilities close amid a ‘scandalous’ lack of funding
At least 10 hospices have been forced to shut down their in-patient units over the past two years because of a lack of funding.
Hospice Palliative Care Association (HPCA) CEO Liz Gwyther told Times Select that hospices rely on overseas donations and fundraising initiatives to keep their operations going. Only 10% of their funding comes from the government.
There are 140 independently run hospices in SA, who operate under the umbrella of the HPCA, which accredits them against a set of standards.Research shows that dying people live longer in hospices when their emotional and physical pain is taken care of, said Gwyther.
But there is a “scandalous” lack of funding for South African hospices, said Shaun Thomas, HPCA marketing.
“When funding runs out, what happens to the patients?" asked Gwyther, a palliative care doctor. She said doctors are often quoted as saying there is nothing more that can be done for a terminally ill patient. But “there is always something more”. Well-trained doctors with experience in pain management can control pain, including pain caused by cancer, she said.
Terminally ill patients can go pain-free through their last days.But when hospices have funding shortages, the in-patient unit “is the first thing to go”.
Hospices ensure patients do not have to die in hospitals, but are looked after in a home-like atmosphere. Hospices that are forced to close their in-patient units send nurses to support patients in their families’ homes.
Two years ago, the Soweto hospice closed. It now has 10 nurses that make door-to-door home visits to monitor and help about 276 patients. But that is only for patients who have homes to go to, and family and friends who can act as caregivers.
A hospice at Charlotte Maxeke Johannesburg Academic hospital was also shut down about two years ago owing to a lack of funding.
It is not cheap to operate a hospice. The Stepping Stone hospice in Alberton, for instance, which has helped 1,200 patients since it opened in January 2013, costs about R750,000 per month to function. About 80% of that is staff costs, its owner, Tersia Burger, told Times Select.Some medical aids pay for hospice care while others pay only for seven days. Patients may end up in a hospice for weeks. Medical aids also do not pay for all parts of the treatment.
“Death is a process. Dying is expensive,” said nurse Sheryl Newman, also from the Stepping Stone hospice.
She said medical aids will easily pay for a person to spend four months in an intensive care unit or to be placed on a ventilator in hospital, but that same patient will have limited hospice benefits. Some medical aids pay for the last seven days of a patient’s life in a hospice.
Newman said this is nonsensical.
“So must I see a patient in November and tell them, well you come back here on March 21 and we will treat you for seven days and then you will die on March 28?”
Funding shortages also threaten other projects that fall under the HPCA. It works with support groups and NGOs that run community HIV adherence clubs. The adherence clubs help HIV-positive people to take their medicine. Members meet every two or three months in someone’s home or in a community hall, and collect medicine from the clubs.
There are 20,000 such clubs connected to various NGOs that operate under the HPCA umbrella, offering support to almost 130,000 people. But funding for these clubs – which up to now have been supported by the US President’s Emergency Plan for Aids Relief – will end in October, leaving another carefully managed health support system vulnerable to collapse.