Six Weeks in Soweto: An Australian Experience of Palliative Medicine in South Africa

South Africa has more people living with Human Immunodeficiency Virus / Acquired Immune Deficiency Syndrome (HIV/AIDS) than any other country, ¹ as well as a high prevalence of tuberculosis, unemployment, poverty, and crime. HIV/AIDS is the leading cause of death, although underreported on death certificates, resulting in infectious disease being the leading documented cause of death. ² External causes (for example, road traffic accidents, burns, assaults) are the fifth most common registered cause of death. ² These factors result in South Africans dying young, with the most common age at death being 30 to 40 years. ² Like many countries, there exists a considerable health gap between different ethnic populations.

Johannesburg, the largest city in South Africa, is a cosmopolitan city of contrasts. Home to four million people from multiple ethnic backgrounds, speaking any of 11 national languages, it comprises the country's wealthiest and poorest citizens. Depending on opinion, Soweto is either a beloved or feared southwest township of Johannesburg, where over 1.3 million people live, some in very basic housing without electricity or running water. In 2012, I was fortunate to volunteer with a local palliative care service, delivering inpatient and community palliative care throughout Soweto and the greater city of Johannesburg. This was an eye-opening experience that significantly broadened my training in palliative medicine.

Working within two inpatient units, I was reminded of the value of good clinical assessments and was forced to reduce my dependence on pathological and radiological investigations, as these represented luxuries many patients could not afford. Morphine, being the only available parenteral opioid, had surprisingly few side effects when administered in end-stage renal failure, and traditional hymns and songs sung by nursing staff were a novel approach successful in calming patients with agitated refractory delirium.

Working with the community services, I visited some of the country's wealthiest and poorest people. We attended child-headed households in which orphaned 15-year-old patients, themselves experiencing symptoms of HIV/AIDS, were nonetheless responsible for their younger siblings. My practice was developed around advice to “treat what you see, with what you have” and “you cannot begin to improve a person's pain until you first address the fact that he is hungry and cold.” Doctors often went on home visits armed with donated food and clothing parcels, and were creative in using vegetable oil, pap (a traditional porridge made from maize), and peanut butter as affordable calorie-rich supplements.

The power of community in Soweto was inspiring, with the majority of palliative care referrals originating from concerned neighbors. In an area known for crime, nursing staff felt safe carrying medications and traveling alone in marked cars or on foot, sighting high community respect for the hospice service. Stigma, however, was occasionally evident, with some families declining community palliative care due to fears the house would be ‘labeled’ as having HIV/AIDS or tuberculosis.

Working in a country and culture so different from my own was an enlightening experience in self-identity. Despite clear differences, all patients I cared for were welcoming, understanding, and quickly forgiving. When informed a dying lady had five children, including two sons who were late, “Late for what?” I asked. I did not expect that most elderly patients would have buried a number of their children. When a deteriorating and acutely symptomatic man promptly requested discharge and planned to travel home, 300 km away, “Why now?” I asked. The importance for some patients to die at their birthplace was previously unknown to me, and I soon learned that when a patient requested to “go home,” they usually knew better than I that their time remaining was short.

Practicing palliative medicine internationally provided insights and experiences unattainable locally. Treating diverse diseases with reduced access to resources and medications in a foreign cultural setting compels one to modify their approach to patient care and develop a flexibility of practice. The exposure gained from this international experience has increased my awareness of challenges affecting the provision of palliative medicine globally and furthered my appreciation for the relative luxuries of Australian palliative medicine resources.