Palliative care is recognised as an integral part of care for people living with HIV and improves quality of life. It can also support adherence to HIV treatment.
How many people need palliative care for HIV and AIDS?
Both adults and children need palliative care for HIV and AIDS. According to the Global Atlas of Palliative Care at the End of Life, over 1.2 million people dying of AIDS needed palliative care at the end of life. Many more people living with HIV could benefit from palliative care from the point of diagnosis.
Worldwide 5.7% of adults needing palliative care at the end of life have HIV and/or AIDS. The burden is higher in the African region, where this figure increases to around 42%.
10.23% of children needing palliative care at the end of life died from AIDS. In the African Region, those with HIV and AIDS represent 19% of children in need of palliative care.
The response to HIV and AIDS
Governments should review national health and HIV disease strategies and policies to make sure that palliative care is part of these. Access to opioid pain medication and the development of palliative care guidelines and standards for HIV and AIDS is vital.
Civil society groups, such as the Treatment Action Campaign in South Africa, have successfully campaigned for better access to treatment. It is important that around the world these groups are supported to demand their right to palliative care without fear of stigma or persecution.
Michael, a teenager from Zambia, wrote about this journey with palliative care for the Touching Rainbows book, published by the International Children’s Palliative Care Network.
My name is Michael. I am 15 years old and am from Zambia. In 2009 I developed a sore on my leg. Over time, the sore worsened and my leg became very swollen and itchy. I had to leave school and was taken to the hospital, where doctors discovered that I was HIV positive and that I had Kaposi’s sarcoma – a type of skin cancer.
My priest took me to Our Lady’s Hospice in Lusaka. The doctors told me that I can no longer be cured, but I am on second line antiretroviral treatments and am undergoing chemotherapy so that I can try to get better.
Before I came to the hospice, I got sick very often with malaria or the flu. Since I have been living at the hospice I have been feeling better. My nurse gives me medicine, washes and cleans my leg, and makes sure that I am feeling OK. I get morphine five times a day to help me deal with the pain in my leg.
Because of the palliative care, I do not have much pain anymore, and my problems are not as bad as they were before. My leg is no longer in very much pain.
I am glad that I live at the hospice where I have access to medicine, and people are around to look after me. My family gets to visit me every day, and they tell me that it is nice for them to see that I am no longer in much pain.
Hospice and palliative care can support a greater quality of life for people living with HIV and AIDS, as well as their families and carers. In addition to addressing a person’s pain, hospice and palliative care staff can help with psychological and social issues, such as dealing with stigma, and can support adherence to anti-retroviral treatment.