At King Edward Hospital, I was invited to sit in on the weekly mortality meeting, where the doctors and interns discuss the deaths that occurred over the past week and how they might have been prevented. There were three cases – one a child with down syndrome and a heart defect, another with TB meningitis, and a third with heart failure who was waiting for a transplant. The docs discussed what could have been done differently, but the general consensus on each was that what was most needed in each case was palliative care.
It seemed like a fairly standard meeting of case discussions, and most of the interns looked bored as they tried not to be called upon, but I was unprepared for the last question, posed by the head of pediatrics; “What might have been different if we were in a developed country?” The interns all spoke up then. The baby with down syndrome, thanks to genetic counseling, would most likely not have been born, and if so, would have had a heart operation soon after birth. The TB meningitis case simply wouldn’t have occurred. On the off chance it did, docs in a developed country might not recognize it, but would probably still give an effective course of treatment. And the child with heart failure would have been given a transplant at least a year before.
This last question stuck with me, and so I brought it up later to the department director, a senior doctor at the hospital. By superficial measures, the pediatric ward at King Edward seems to offer a high standard of care. The outpatient and resuscitation/intensive care pediatric units are bright, airy and clean, newly built by a large corporate donor. Although some docs made comments about the corporation’s desire to be seen doing good rather than offering help where it might be most needed, it is pleasant to see this part of the hospital in such good shape. Despite some obvious differences, like the metal-contraption beds and cribs that I’m certain have been outlawed in the US and very few toys or murals, pediatrics at King Edward doesn’t look all that different from a pediatric department in the US. What I discussed with the doctor, however, tells a different story.
All three cases show an interplay of cultural barriers, lack of education, and system incompetence. In the case of the child with down syndrome and a heart defect, for example, it’s possible that the religious beliefs against abortion of the nurse who performed prenatal testing prevented her from telling the parents about the defects. When the child was born in a small district hospital without the supervision of a doctor, the midwife might not have picked up the signs of heart defect. By the time the infant was experiencing problems and was referred to King Edward, the heart had become enlarged (as muscle grew in an attempt to compensate for the defect), and there was severe cardiac distress. The child had been on what is called the “roll-over” list for surgery, meaning almost any other patient could take priority and bump him off the schedule. With only one cardiothoracic surgeon in the region, and given the child’s low predicted quality of life and unstable social situation, he passed away before he could be given a coveted spot in the schedule.
TB meningitis is a form of TB that only presents itself in immunocompromised children, such as the second patient, who was HIV positive. A child gets HIV from his/her mother during birth, either because the mother is unaware of her status, or unaware of the available treatments, or unaware of the importance of preventing mother to child transmission. In any case, after being born with HIV, the child was then susceptible to becoming infected with TB, passed on from relatives who were either careless or unaware of their own infection. In the final case of the patient who needed a heart transplant, the doc described the lack of infrastructure around organ transplantation, complicated further by an unwillingness among many South Africans to donate, whether it be due to cultural beliefs or lack of education. In these series of circumstances, it’s easy to see how the docs were left to offer only palliative care, and how a hospital department that might look a lot like one in the US is debilitated by its setting and support.
Amanda, it would be interesting to meet the South African equivalent of Paul Starr to do a good look at how the medicalization process in South Africa compares and contrasts to the U.S. over the last 100 or so years.
Rich, agreed! There’s a lot of conflicting information and I imagine it’s an interesting history. My favorite example – the first successful heart transplant ever was performed in South Africa, and yet there is a terrible organ donation infrastructure.