Integrating Community Palliative Care in South Africa

OCTOBER 2008 — At Gateway Clinic in Sekukune District, South Africa, Nurse Sister Sara is taking part in the Integrated Community Palliative Care (ICPC) pilot project. The project, which is being implemented in four sites in South Africa, integrates palliative care into the primary healthcare system for patients who have been referred through their communities or clinics.

Sister Sara says one of her greatest joys is the improved relationship between nurses and home-based caregivers fostered by the ICPC. "There used to be conflict. I used to think of [home-based caregivers] as taking our jobs. Now I rely on them."

Ouma Tsetsewa is one such caregiver. Since 2002, she has seen five patients daily, and has 42 patients total. She washes clients' clothes, cleans their homes, ensures that they take their medicine, and works with their families to make sure there is continuity while she is away.

The ICPC was developed in 2006 by FHI at the request of the Government of South Africa, which wanted a model for mainstreaming palliative care into communities. After conducting an assessment to inform the project design, FHI helped develop the formal partnerships needed to launch the model. The ICPC links existing health system services with community-care support mechanisms such as home-based and hospice care, and support groups. The aim is to provide different levels of palliative care at each level and to ensure sustainability.

The ICPC model is family-centered and applies a comprehensive, holistic, and team approach toward an integrated system. ICPC engages primary healthcare facilities and their multidisciplinary teams; ART sites and their interdisciplinary care teams; community- and home-based care groups and support groups; and communities and families. This integrated approach makes it possible to provide the full continuum of palliative care—from diagnosis to support for end-of-life care and bereavement—and to meet the physical, emotional, social, and spiritual needs of patients.

Patients and their families are already experiencing improved quality of care as beneficial links between facility- and community-based services are established. For example, one "symptom" of HIV is stigma. Many patients are even rejected by their families. "They are afraid to talk. There is no kind of spiritual or emotional support for them," says Sister Sara. "Their biggest concern is fear. They think they're going to die."

At the Gateway Clinic, however, the palliative care program provides counseling, gives patients a telephone number they can call anytime, and supports patients to disclose their HIV status to at least one family member who can accompany them to the clinic. By providing loved ones with counseling, teaching them appropriate care skills, and offering bereavement support, families are also integrated into the palliative care approach.

PHOTO: (Top) Orphans and vulnerable children at an after school drop-in center in South Africa are supported by the Makhuduthamaga Umbrella organization, an FHI partner who works with those who offer home-based care to ensure that vulnerable households receive many types of support, including medical care and emotional support. (Bottom) FHI provides technical and financial help to the Joahnnesburg Hospital Palliative Care Team, pictured here (from left to right): Sr. Doris Hadebe, Sr. Mary Nhlapo, Sr. Caroline Sebitso, Ms Tshidi Legodi, and Dr. Nokuzola Ngxekisa (FHI/South Africa)