an World AIDS Day on 1 December is intended to shine a spotlight on a virus that has been a subject of scientific research and debate since the virus was identified in the 1980s. The Human Immunodeficiency Virus (HIV) timeline shows the worst and best of human nature. From fear, inequality and exclusion to hope and determination. Despite the huge success South Africa has had in fighting HIV/AIDS, many people still get infected with HIV every year.
Hospices provide care for about 100,000 patients each year. Today, 44% of those patients are HIV positive. Many suffer from more than one diagnosis such as coinfection with TB, cancer and other chronic conditions.
Hospices have a very long history of providing care to HIV Patients.
They were one of the first organisations to start to respond to the HIV pandemic – long before anti-retrovirals (ARVs) were available. According to Bishop Kevin Dowling, who worked with the Tapahoho Hospice: “Back then the HIV epidemic was calling for holistic end of life care in the most challenging of conditions, shocking conditions, and this holistic care had to embrace every facet of the life of the person and their psyche, including the spiritual dimension of dying people who had no hope at all because they were succumbing to Aids-defining diseases for which there was no remedy yet. This holistic end of life care in those conditions was, in fact, palliative care”.
ARVs have changed the face of the disease, with those who start on it, and stick to it, often living healthy lives. Yet there is still a stigma around the disease that prevents many people from getting tested.
Hospices have reports from those who have a minimal support structure in their life of their fear of discrimination and rejection in their families when they are informed that the test has shown they are HIV positive. People also have fears and anxieties about their future when they are diagnosed with HIV. Women can be fearful about informing their partners on whom they may depend for survival, and sometimes fear bringing ARV drugs home in case they are discovered. And if you are desperately poor, it is very difficult to find adequate, nourishing food.
And still, the death rate at Tapoloho Hospice dropped from 36% in 2004 to 2% in 2019, which signifies the move from a death sentence to a life-threatening illness with the provision of ARVs.
Today the focus is on keeping patients in care, bringing back patients that stopped treatment to care and supporting them though their journey. “While we know that ARV’s change the dynamic of the disease, we believe that ARV therapy alone is not enough,” says Ewa Skowronska, CEO of the Hospice Palliative Care Association. “Holistic care that includes psychosocial, spiritual support and bereavement are all needed to offer people a better quality of life and to help them comply with the medication schedule. It’s a complicated disease as it carries with it the psychological challenge of a lifetime on medication and combatting stigma. A support system that assists people to mentally and emotionally work with the diagnosis is really important.
“Hospices care for patients of all ages, including teenagers. Some of them may have got infected via MTCT (Mother to Child Transmission) at birth or later in life. Some of the hospices care for the Orphans of parents who were hospice patients and who died of AIDS. They monitor their health, school performance, helping with navigating the social system of grants and reduced fees, provide nutritious meals and support those children psychologically so that they can effectively participate in a future healthy life and embrace optimal living.”
Says Zodwa Sithole, Head of Advocacy at CANSA: “HIV infection can lead to a weakened immune system and a lower number of CD4 cells that help fight viruses, such as human papillomavirus and Kaposi sarcoma herpesvirus. A stronger immune system provides very important protection against many types of cancer. It’s important that people take all of their medications on schedule and not skip doses. If you do have both HIV and cancer, palliative Care can help by managing your symptoms and treatment side effects. These include pain, fatigue, shortness of breath, depression, anxiety, nausea, vomiting and diarrhoea. Palliative care provides extra support from a dedicated team of specialists to help you or a loved one get through a serious illness.”
Today Hospice care aims to improve the quality of life and wellbeing of patients diagnosed with a life-threatening or life-limiting condition. It helps people live as fully and as well as they can to the end of their lives, however long that may be and when the times comes, to support dignity in dying.
