HIV palliative care in southern Africa is being provided by family members and local communities, who are “often inadequately trained in clinical skills and lack access to essential drugs,” according to a review article published in the June 4th edition of The Lancet. The investigators also argue that palliative care will continue to be important in Africa even when antiretrovirals become available.
At the end of 2003, there were estimated to be over 26 million HIV-positive people in sub-Saharan Africa and over two million AIDS deaths.
Palliative care is accepted as an integral part of disease management, providing pain and symptom control to patients with terminal or life-limiting diseases, and offering psychological support to both patients and their families from diagnosis until death.
However, “what constitute feasible, accessible, and effective” models of HIV palliative care in Africa remains unresolved, note the investigators from King’s College, London. They are therefore determined to describe the African context of palliative care, the maximum coverage of palliative care schemes and referral models, and highlight examples of good practice. Reports on palliative care activities were obtained from funders, non-governmental organisations and practitioners in 2003. A total of 26 palliative care service organisations were described.
“A good death in Africa varies culturally”, write the investigators, and models of care “must respond to cultural variation and preferences both within and between countries.”
Traditional healers are often the first source of help accessed by individuals with HIV or cancer, and “the potential for an alliance between traditional and palliative care is strong”, suggest the investigators. They highlight a South African scheme designed to incorporate traditional healers into mainstream healthcare. Patients using traditional healers seem more likely to adhere to their pain relief medication.
Innovative palliative care services have also been established. In Uganda, Little Hospice Hoima provides affordable palliative are at a village level, and the Mobile Hospice, Mbarara, offers mobile-home palliative care through roadside clinics.
Obstacles nevertheless exist amongst healthcare workers, including poor access to essential drugs and high rates of illness and death, caused by tuberculosis and HIV.
Hunger and planning for the care of orphans are also significant palliative care issues in southern Africa.
Who provides the service?
Inpatient palliative care is usually unthinkable due to lack of capacity and cost. In addition, it is often socially unacceptable. By contrast “home care is cheap and acceptable, and can offer care that respects cultural practice”. Planning between hospitals and families can reduce bed-blocking, but the investigators note problems with family care. The level of care might be inadequate “and it is not yet clear how much trained professional input is needed to supervise lay support and patients”.
The use of simple palliative care protocols would help improve optimum coverage for palliative care services, the investigators suggest. They also note “stigma can prevent patients with HIV disease from referring themselves to hospice”. A way of overcoming this could be the use of community volunteers. For example, Hospice Africa Uganda has trained volunteers to identify and refer patients who could benefit from palliative care services.
HAART and palliative care
“It is a misconception that antiretroviral therapy has obviated the need for palliative care”, write the investigators, who note the high rates of treatment failure are due to poor adherence, toxicity, side-effects and resistance. In addition, even with HAART “the burden of pain continues” as HIV-related cancers “have in many cases not become less common, and the psychological and spiritual needs of people with HIV persist.”
The investigators recommend that HAART programmes in Africa should incorporate palliative care “to ensure adherence, improve clinical benefit, reduce potential for emergence of resistant strains, and offer care to those for whom treatment fails.”
“National policies and strategies need to be established” to ensure adequate palliative care structures. The investigators note that although a small number of centres are offering high quality care, they are not integrated into wider healthcare and appear to be unevaluated.
Harding R et al. Palliative care in sub-Saharan Africa. The Lancet 365: 1971 – 1977, 2005.