Illustration by Joelle Bolt
Global Palliative Care
End of life care in Africa is a tragedy that must be addressedMany African countries have two healthcare systems: an excellent one for the HIV positive and a very poor one for the negative. Yet, on the whole, HIV/AIDS is decreasing and those on anti-retroviral therapy will most likely die of another cause.
Meanwhile, cancer is increasing and the suffering of cancer patients in Africa is really horrific.
One third of African countries do not have any treatment for cancer and those that have oncology only manage to see about 5% of all in need, most of whom come very late. It is tragic to see these poor patients lying in remote villages with terrible sores and pain. The few who do get treatment are often gasping their last breath after an epic journey to reach the only center in the country. Commonly they have no money, even for food.
Yet there is money available for cancer. In the West, hundreds of millions are spent on care and research to find cures while the pain burden in Africa and other developing countries grows and grows.
I founded Hospice Africa Uganda in 1993, with the vision “to help all in need of palliative care in Africa.” In the 1990s, the governments of rich countries were into prevention; if we had wanted condoms, there were millions available but there was virtually no money for end of life care. Those already suffering were not being considered, although the few donors we had trusted us to give good care to our patients. We grew in strength and ethical principles.
Today, Uganda has one of the best palliative care services in Africa; yet with an affordable and culturally acceptable service, we are only reaching one in ten of those in need.
Palliative care became a buzz word for donors when the President’s Emergency Fund for AIDS began in 2003. Palliative (PEPFAR) care organizations began to proliferate and the donor organizations used for transferring PEPFAR funds all wanted a slice of this funding to support care for HIV/AIDS. But when we looked for funding to bring palliative care for other diseases throughout Africa the response was, and still is, too small.
The systems for palliative care in the world are top-heavy. A great deal of money is spent on running organizations that purport to organize those who are delivering care. Their staff are seen as the wise ones, yet most are not involved with patients. Their costs are high, including large salaries and expensive travel. Meanwhile, those providing care work long hours to bring relief to the suffering and are paid little.
Only 12 African countries out of 53 have affordable, oral morphine to treat the terrible suffering of the African cancer and/or AIDS patient. Even in these countries, the morphine is only available close to the manufacturing pharmacy, and does not reach distant villages. Taking pain relief to the poorest requires more funds for training and the selflessness to deliver care in difficult circumstances.
Donors and those caring for patients must work together. We need each other. But the form that care takes should be directed by those on the ground. Instead, we are often told to increase care for HIV/AIDS patients, or “clients,” who need support care only. These patients may be kept on to improve statistics for donors at the expense of the critically ill and those at the end of life. Palliative care is intensive care; it takes time to deliver. Needlessly increasing the numbers of patients reduces the quality of that care.
What we need is a revision of our values. We need a global palliative care agreement where the funding ensures care for those in need. We need donors who have no other agenda but the best care for the patient and family. We need a consensus statement that supports our caring teams, and moves us all towards a renewal of our commitment to palliative care needs of our patients.
Author Bio:
Anne Merriman is founder and presently Director of Policy and International Programs at Hospice Africa in Uganda.
Photo: Illustration by Joelle Bolt
