Palliative care was developed in Africa by motivated 'pioneer' individuals, rather than through mainstream national health systems. This has resulted in isolated centres of excellence, such as Zimbabwe's Island Hospice Service, Hospice Africa Uganda, Nairobi Hospice, and Tanzania's Ocean Road Cancer Institute. Along with other such centres dotted across the continent, these provide some excellent demonstration sites for national scale-up – but however impressive, they can't reach anywhere near the number of people in need.
Palliative care remains absent from the vast majority of African national health policies or basic care packages, with almost half of African countries identifying no hospice or palliative care activity. NGOs, hospices, and faith- and community-based organisations are left with the impossible task of filling the gap. This means that African palliative care is overwhelmingly delivered through home-based care, or by family or community volunteers, with the support of health professionals.
Care tailored to Africa
While APCA acknowledges that the concept of palliative care within Africa has its roots in the UK model, we believe that it must be adapted to African traditions, beliefs and cultures – all of which vary between communities and countries. Care should be provided where possible by a multi-disciplinary team, which includes community workers and traditional healers, as well as nurses, doctors and other health care professionals.
Inevitably, provision varies according to context, but Africa currently faces extremely restricted access to the multi-disciplinary teams needed to deliver holistic palliative care tailored to each patient. Most health services have no palliative care team, with health care providers working with different colleagues at different times. The reality is often simply a nurse and a community volunteer, working with family members – an arrangement which is overwhelming for hard-pressed health carers and inadequate for meeting patients' needs. Working with all our stakeholders, APCA is determined to help bring access to multi-disciplinary palliative care teams to everyone in need across Africa.
Barriers to palliative care delivery
APCA and other champions of palliative care in Africa face a set of challenges specific to the continent. But by identifying them and learning as much about them as possible, we can develop strategies for palliative care delivery that can overcome them.
Many governments remain unaware of and uncommitted to delivering palliative care services, instead focusing scarce resources on curable diseases. Cancer treatment in particular is not prioritised, and there's an absence of national palliative care policies in the majority of African countries. Even where there is interest, a lack of funding remains constant.
The WHO urges African governments to institute policies on the importation and use of drugs for effective pain and symptom management (including opioids), so everyone can access affordable and effective medication. Yet many medicines remain unavailable and pain is unacceptably under-treated among children and adults. In most of Africa, legislation restricts the prescribing of opioids to doctors, severely limiting its availability given the continent's low doctor-patient ratio and the predominantly non-facility based health care in rural areas.
There is a variety of training courses in Africa, from short certificate courses to diplomas and undergraduate and masters' level degrees. But despite the WHO 2004 recommendation that governments include palliative care in training curricula for health workers at all levels, its integration into higher learning is not widespread in Africa, resulting in a severe shortage of palliative care professionals. Clinicians are often unaware of how to assess and treat pain, and 'opiophobia' is rife (fear of addiction and that prescribers will be vulnerable to prosecution). Palliative care education needs to target diverse audiences (including policy makers and the general public) to increase awareness and change attitudes.
Despite powerful empirical evidence of the benefits of palliative care in Africa, there's a lack of formal evidence from rigorous research, and of Monitoring and Evaluation (M&E) of service delivery. This research is needed to prove how palliative care transforms lives and communities, to underpin advocacy and education.
Africa's low urbanisation means services often need to be provided to low-density populations across vast rural areas (Namibia averages two people per km2; Sudan's population is 80 per cent rural or nomadic). Many health professionals prefer to work in urban areas, so rural health provision is often left to community- and home-based volunteers, able to deliver care that is only supportive in nature.
There exists a strong lack of public awareness about palliative care – most people haven't heard of it, or if they have, understanding it as an end-of-life intervention needed only after curative treatment is stopped. This belief persists despite powerful evidence that patients need pain and symptom management and psychosocial care throughout their disease. There are also cultural taboos around death and the disclosure of diagnosis. Many people with HIV/AIDS and cancer delay seeking medical help, through fear of stigma and ignorance of symptoms and available treatment.
Africa suffers from a lack of consensus that (or even consideration whether) palliative care is a basic human right – even though powerful philosophical and legal arguments have been made to support the case that it is (as is APCA's firm conviction).
In 2002, palliative care donors and workers in Africa recognised that the continent's pioneering islands of palliative care excellence were doing an impressive job, but that it was impossible for them to reach vast majority of Africa's people – both in terms of their own capacity and of working outside national health systems. Something had to be done. That's where APCA came in.