As a result of limited access to antiretroviral treatment, many South Africans die yearly of AIDS. It is important that the end-of-life needs of these people be met. This article examines the major challenges involved in providing quality end-of-life care to people with AIDS in South Africa. Published reports are reviewed, as is the author's experience living and working in KwaZulu-Natal, South Africa. The issues discussed include the nature of the South African health care system, with emphasis on the scarcity of palliative care resources for AIDS patients, ineffective control of pain, models of care such as the integrated community-based home care model that relies heavily on community caregivers to meet the needs of people dying of AIDS, the living conditions of AIDS patients and their families, and AIDS-related stigma. Broad recommendations are presented for improving palliative care services for people with AIDS in the South African context.
Benatar SR. Health care reform and the crisis of HIV and AIDS in South Africa. N Engl J Med.2004; 351: 81-92.
2.
UNAIDS. AIDS Epidemic Update: December 2004. Available at http://www.unaids.org. Accessed March 11, 2005.
3.
Dorrington R, Bourne D, Bradshaw D, Laubscher R, Timaeus I. The Impact of HIV/AIDS on Adult Mortality in South Africa, Technical Report. Cape Town, South Africa: Medical Research Council; 2001.
4.
UNAIDS. Epidemiological fact sheets on HIV/AIDS and sexually transmitted infections. 2002 Update. Available at http://www.unaids.org. Accessed September 12, 2004.
5.
UNAIDS. Report on the HIV/AIDS pandemic. Available at http://www.unaids.org/pandemicupdate/report/html.index. Retrieved October 21, 2004.
6.
Centers for Disease Control and Prevention. HIV/AIDS update. Available at http://www.cdc.org. Accessed July 27, 2004.
7.
Rehle TM, Shisana O. Epidemiological and demographic HIV/AIDS projections: South Africa. Afr J AIDS Res.2003;2:1-8.
8.
Wines M. As AIDS continues to ravage, South Africa ‘recycles’ graves. NY Times. July 29, 2004:A1-A1.
9.
Abdool Karim SS. Rising to the challenge of the AIDS epidemic. S Afr J Sci. 2000;96:262-262.
10.
Heinecken L. Facing a merciless enemy: HIV/AIDS and the South African armed forces. Arm Forc Soc. 2003; 29:281-300.
11.
Nattrass N. The Moral Economy of AIDS in South Africa. Cambridge: Cambridge University Press; 2004.
12.
Cohen R. In South Africa, denial is a form of protection. NY Times. November 28, 2004:A3-A3.
13.
Editorial. South Africa needs to face the truth about HIV mortality. Lancet. 2005;365:546-546.
14.
Henderson CW. AIDS overwhelms South African hospitals. AIDS Weekly. January 17, 2000:20-21.
15.
Walker L, Reid G, Cornell M. Waiting to Happen: HIV/AIDS in South Africa. Cape Town, SA: Double Storey; 2004.
16.
Uys L. Aspects of the care of people with HIV/AIDS in South Africa. Public Health Nurs. 2003;20:271-280.
17.
Dworzanowski B. Caring for people dying of AIDS: lessons learnt from hospices. Soc Trans. 2002;33:420-431.
18.
Gwyther E. South Africa: the status of palliative care. J Pain Symptom Mange. 2002;24:236-238.
19.
Harding R, Higginson IJ. Palliative care in Sub-Saharan Africa. Lancet. 2005;365:1971-1977.
20.
Henley LD. End of life care in HIV-infected children who died in hospital. Developing World Bioeth. 2002;2:38-54.
21.
Carlisle D. Africans are dying of AIDS without pain relief. BMJ. 2003;327:1069-1069.
22.
Norval DA. Symptoms and sites of pain experienced by AIDS patients. S Afr Med J. 2004;94:450-454.
23.
Jagwe JGM, Barnard D. The introduction of palliative care in Uganda. J Palliat Med. 2002;5:160-163.
24.
Kikule E. A good death in Uganda: survey of needs of palliative care for terminally ill people in urban areas. BMJ. 2003;327:192-194.
25.
Sepulveda C, Habiyambere V, Amandua J, et al. Quality care at the end of life in Africa. BMJ. 2003;327:209-213.
26.
Ramsay S. Leading the way in African home-based palliative care. Lancet. 2003;362:1812-1813.
27.
Higginson IJ. End-of-life care: lessons from other nations. J Palliat Med. 8:S-161-S-173.
28.
Uys L, Hensher M. The cost of home-based terminal care for people with AIDS in South Africa. S Afr Med J. 2002;92:624-628.
29.
Uys L. The practice of community caregivers in a home-based HIV/AIDS project in South Africa. J Clin Nurs. 2002;11:99-109.
30.
Giarelli E, Jacobs LA. HIV/AIDS care in KwaZulu-Natal, South Africa: an interview with Dr. Leana Uys. J Assoc Nurses AIDS Care. 2001;12:52-67.
31.
De Guzman A. Reducing social vulnerability to HIV/AIDS: models of care and their impact in resourcepoor countries. AIDS Care. 2001;13:663-675.
32.
Center for AIDS Development, Research and Evaluation (CADRE). Integrated Community-Based Home Care (ICHC) in South Africa. Cape Town, SA: The Policy Project; 2002.
33.
O'Neill JF, Romaguera R, Parham D, Marconi K. Practicing palliative care in resource-poor settings. J Pain Symptom Manage. 2002;24:148-151.
34.
Mitton J. The sociological spread of HIV/AIDS in South Africa. J Assoc Nurses AIDS Care. 2000;11:17-26.
35.
South African Health Review. Durban, SA: Health Systems Trust; 1999.
36.
Gilbert L, Walker L. Treading the path of least resistance: HIV/AIDS and social inequalities - a South African case study. Soc Sci Med. 2002;54:1093-1110.
37.
Poku NK. Africa's AIDS crisis in context: “how the poor are dying.”Third World Q. 2001;22:203-203.
38.
Gow J, Desmond C. Households. In: Gow J, Desmond C, eds. Impacts and Interventions: The HIV/AIDS epidemic and the children of South Africa. Pietermaritzburg, SA: University of Natal Press; 2002:111-143.
39.
Barnett T, Whiteside A, Desmond C. The social and economic impact of HIV/AIDS in poor countries: a review of studies and lessons. Prog Dev Stud. 2001;1:151-170.
40.
Strydom H, Raath H. The psychosocial needs of adolescents affected by HIV/AIDS: a South African study. Int Soc Work. 2005;48:569-580.
41.
Bachmann MO, Booysen FLR. Health and economic impact of HIV/AIDS on South African households: a cohort study. BMC Public Health. 2003;3:14-14. Available at http://www.biomedicalcentral.com. Accessed January 5, 2005.
42.
Bachmann MO, Booysen FLR. Relationships between HIV/AIDS, income, and expenditure over time in deprived South African households. AIDS Care. 2004;16:817-827.
43.
Hosegood V, McGrath N, Herbst K, Timaeus IM. The impact of adult mortality on household dissolution and migration in rural South Africa. AIDS. 2004;18:1585-1590.
44.
Cross C. Sinking deeper down: HIV/AIDS as an economic shock to rural households. Soc Trans. 2001;32:133-147.
45.
Karim QA. Women and AIDS: the imperative for a gendered prognosis and prevention policy. Agenda. 1998;39:15-25.
46.
Leclerc-Madlala S. Virginity testing: managing sexuality in a maturing HIV/AIDS epidemic. Med Anthropol Q. 2001;15:533-552.
47.
Ackermann L, de Klerk GW. Social factors that make South African women vulnerable to HIV infection. Health Care Women Int. 2002;23:163-172.
48.
Kalichman SC, Simbayi L. Sexual assault history and risks for sexually transmitted infections among women in an African township in Cape Town, South Africa. AIDS Care. 2004;16:681-690.
49.
Peacock D, Levack A. The men as partners program in South Africa: reaching men to end gender-based violence and promote sexual and reproductive health. Int J Mens Health. 2004;3:73-188.
50.
Warwick I, Bharat S, Castro R, et al. Household and community responses to HIV and AIDS in developing countries. Crit Pub Health. 1998;8:311-328.
51.
Brown L, Macintyre K, Trujillo L. Interventions to reduce HIV/AIDS stigma: what have we learned?AIDS Educ Prev. 2003;15:51-51.
52.
Baleta A. Widespread horror over killing of AIDS activist in South Africa. Lancet. 1999;353:130-130.
53.
AIDS activist's killing blamed on stigma of HIV in South Africa. Chicago Tribune. December 23, 2003: 4-4.
54.
Nelson Mandela/Human Sciences Research Council Study of HIV/AIDS. South African National HIV Prevalence, Behavioral Risks and Mass Media Household Survey 2002. Cape Town, SA: Human Sciences Research Council Publishers; 2002.
55.
Peltzer K. HIV/AIDS/STD knowledge, attitudes, beliefs and behaviors in a rural South African adult population. S Afr J Psychol. 2003;33:250-260.
56.
Strydom H. HIV/AIDS and South African adolescents: attitudes and information needs. Soc Work/Maat Werk. 2003;39:59-72.
57.
Strode A, Grant K. The role of stigma and discrimination in increasing the vulnerability of children and youth infected with and affected by HIV/AIDS. Research report commissioned by Save the Children (UK). Pretoria, SA: Save the Children; 2001.
58.
Van der Westhuizen J. Arms over AIDS in South Africa: why the boys had to have their toys. Altern. 2005;30: 275-295.
