When patients hear they have Aids, their first reaction often is to think they have been given the death sentence. But, between the disease and dying lies a grey area, and that’s when palliative caregivers are most needed by patients.
Palliative care aims to relieve the suffering and improve the quality of life of patients with life-threatening illnesses. “When the doctors say there’s nothing more they can do, we come in and say there’s everything we can do,” says Natalya Dinat, director of the University of the Witwatersrand (Wits) Palliative Care Clinic at Chris Hani-Baragwanath Hospital, which provides home-based care to patients with life-threatening illnesses in Soweto.
Everyone has the right to pain relief and the right to a dignified death, says Dinat. Most of the clinic’s patients have Aids and Aids-related infections; some have cancer. “Our focus is to improve the quality of life. [A] slogan of palliative care is, ‘We don’t add days to life, we add life to days.'”
Dinat says: “Pain is underdiagnosed — 80% of patients with Aids have pain and doctors hardly ever ask about pain. Ninety days before death they experience extreme, severe pain.” If patients do not have antiretroviral (ARV) treatment, they start experiencing pain five or six years before death, she says. “People need both pain relief and ARVs.”
A patient with untreated Aids can suffer from diarrhoea, blindness, dementia and sarcomas — in addition to the severe pain Dinat describes. Palliative care nurses and doctors try to alleviate the symptoms where possible and to restore patients’ dignity. Their care is particularly important for Aids and cancer patients who often suffer a lingering and painful death.
Nurses at the clinic have been treating Nonhlanhla (28) since 2004. She was given ARV treatment almost immediately, but she already had Kaposi’s sarcoma — a common cancer among Aids patients — on her legs, which were infected.
When a nurse from the clinic first visited her, she was lying alone in a room. No one would go near her because of the stench of the infection. She could not eat because the smell made her nauseous. The nurse treated her infection and three days later it cleared up. Although she still has the sarcoma and pain in her legs, she can walk around her home and her dignity has been restored.
The clinic’s work isn’t groundbreaking. Giving relief to people in pain is a no-brainer and home-based care makes economic and cultural sense. Most people would prefer to die at home, says Keketso Mmoledi, the clinic’s palliative research coordinator.
Home-based care is much cheaper than hospital care, especially when programmes are nurse-led. Palliative outreach costs R250 a day, while hospital care costs about R1 200 a day. Yet South Africa’s public health rests largely on the hospital system, despite overstretched resources.
A social worker is employed at the clinic to give emotional guidance to patients and their families.
Sometimes patients have no home to go to once discharged by the hospital or they share a bed with other members of the family, despite having diarrhoea. And children left orphaned by the deaths of their parents need outside help.
While palliative care in South Africa has been restricted mainly to the hospice movement, the clinic’s workers feel strongly that such care should be available in the public sector. Yet access to pain relief is often lacking and doctors and nurses frequently are not aware of palliative measures. Dinat says this is starting to change. Training in palliative care is now a requirement for medical students at Wits University and the clinic is a pilot project that is partially funded by the Gauteng department of health. The idea is that once the clinic has shown the way, palliative care will be rolled out across the country.
One problem is that morphine — one of the cheapest and best pain-relieving medicines — is not widely accepted and is often unavailable. Although morphine is not addictive when used to relieve pain, the fear of potential addiction makes doctors reluctant to prescribe it and pharmacies often do not stock it. Even when a doctor is willing to prescribe it, sometimes the patient or his or her partner is against the idea.
Yet morphine is commonly prescribed in developed countries. Just six countries — the United States, Canada, France, Germany, Britain and Australia — consume 79% of the world’s morphine supply. Poor and middle-income countries, including South Africa, consume 6% of the supply, despite being home to 80% of the world’s population, the New York Times reported in September.