Nobel Laureate Elie Wiesel once wrote that “the opposite of life is not death, it’s indifference.” While his words stem from the Holocaust, they may also be applied to HIV/AIDS. Activists say with a scarcity of money and anti-retroviral drugs in developing countries, indifference has cost millions of lives. While death from the disease often cannot be stopped, there are efforts in sub-Saharan Africa to at least give death dignity.
It’s estimated nearly 30-million people in sub-Saharan Africa are infected with the AIDS virus, HIV. And that close to seven thousand people a day die from the disease. Caregivers say, too often, “the final months of their lives are lived in fear, loneliness and considerable pain.”
"None of us want to die in a great deal of pain. None of us want to die with people being terrified of touching us, of caring for us.”
Peggy Harper is executive director of the Foundation for Hospices in Sub-Saharan Africa.
"Particularly in an African culture there are still a lot of beliefs about what happens to you has to do with how you’ve treated your ancestors and how you’ve cared for your ancestors. And so it’s really important that people believe they’ve done the best they can to take care of their loved ones."
The Foundation for Hospices in Sub-Saharan Africa “generates support for African organizations that provide home-based care for those dying of HIV/AIDS.” Ms. Harper says Hospice is a “philosophy of care.”
"People often get confused that they think of it as a building where people would go to die. And it’s really a philosophy, a multi-disciplinary philosophy of care, for people who are diagnosed with a terminal illness. The whole hospice movement has kind of moved to include palliative care, so kind of from diagnosis till death – making sure symptoms are managed well and pain, in whatever kind of way, is reduced."
The first hospice in sub-Saharan Africa opened in Zimbabwe in 1979, a product of a movement in Britain to care for the terminally ill. The Foundation says it now works with hospice programs in ten countries in east and southern Africa.
"There’s a lot of pain, physical pain, that comes with HIV/ AIDS. And that’s one thing people don’t always understand, but there’s a lot of pain that comes with the disease itself. So, people who are not involved in hospice and palliative care for the most part are not getting any pain relief medicine at all."
Peggy Harper says besides alleviating pain, the hospices have also worked to ease the stigma associated with the disease. When health professionals and volunteers visit AIDS patients, it helps dispel myths that that you can catch AIDS simply by being near someone who has it.
Also, HIV/AIDS is an orphan maker. Millions of children have lost their parents to the disease. Hospice workers help terminally ill parents and their children make memory boxes. They contain various items, letters and pictures – lasting proof of a parent’s love. The memory boxes also help to reaffirm a person’s life.
Many of the hospice programs have more than a thousand patients each and volunteers provide much of the care. Often one volunteer cares for as many as forty patients. Many of the volunteers themselves have lost family members to the disease. Yet while the search for a vaccine goes on, and the wait for widespread use of antiretroviral drugs continues, the hospice philosophy is simply to make a difference, one person at a time.