Starting and Managing a Hospice Organisation

Overview Almost all the existing hospice programmes in sub-Saharan Africa were started by health care professionals, as in the rest of the world. These energetic and enterprising individuals felt passionate about providing holistic care to patients whose pain and end-of-life needs could not be met by the conventional health care system. It is largely thanks to their determination and sense of missionary zeal that palliative care has become established and gained credibility and recognition. From the beginning, hospice work has meant teamwork. The early pioneers were volunteers, responding with great resourcefulness, but usually without training or experience in management. When the first programmes started in Africa, in the early 1980s, the majority of patients had some form of advanced malignancy (more than 98% in the authors’ hospice). In the early 1990s, the HIV/AIDS epidemic began its inexorable and insidious growth and, by 2003, HIV/AIDS accounted for 90% of the same hospice’s caseload, even though in real terms the number of patients with cancer also increased. The rapidly escalating need for hospice and palliative care has impacted dramatically on individuals, local programmes, and the growing number of national hospice organisations.