Abstract
The introduction of literature with medical themes into the curricula of medical schools in the United States of America with the purpose of improving the social skills of students, as well as cultivating their empathy and understanding with their patients, is a welcome and much needed development. Conventional medical training that focuses exclusively on clinical issues neglects some of the most important features that shape good doctor-patient relationships. Reading other accounts of illness and death may deepen a physician’s understanding of human need and pain. Because physicians and patients are often strangers from different spiritual, social and cultural backgrounds, physicians can often not relate to experiences of patients regarding their illnesses. Literature can play a supporting role in supplying real, full-bodied and profound accounts of illness and death across cultures and different backgrounds.
Ackerman’s novel Met ’n ompad (“Via a detour”) is an example of a literary text the topic of which (kidney failure) not only informs readers of the dire situation of patients suffering from kidney failure, but also provides some insight into gaps in the legal framework governing organ donation and transplantation in South Africa in a manner that demonstrates the tragic consequences of these shortcomings. The title of the novel suggests a journey that does not follow a straight course. This is indeed the case with the progression of the Anja’s disease, as well as the distress, frustration and anxiety that accompany this path.
The Dednam family depicted in the novel consists of the father, Roy, the mother, Tina, and the children, Theo and Anja. Roy, who has lost his previous job in South Africa due to affirmative action, has little choice but to work as a consultant in Ethiopia, assisting with road construction. Tina’s life revolves around her children, but particularly Anja, who is diagnosed with kidney failure. The readers share with Tina her journey and desperation when they learn that only a kidney transplant may save her daughter’s life. Their waiting for a kidney donor poignantly demonstrates one of the most critical legal shortcomings in South Africa, namely that no national coordination system or national waiting list for organ transplants exists. When a kidney donor (a young boy) is finally found, Anja receives the kidney that saves her life, while her mother is confronted with the donor’s father, who wishes to meet her and Anja. Tina is acutely aware of, and saddened by, the fact that her daughter’s life is saved only because another person’s child had died.
The kidney dialysis patients presented in the novel come from different walks of life and classes. Their individual situations are sketched, showing the grim reality and devastating divide between rich and poor as far as exercising their right of access to health care services in South Africa is concerned. For the indigent patients, kidney dialysis often requires multiple trips via different routes to reach the hospital, whereas those fortunate enough to own a vehicle can visit the dialysis unit in a quick, straight and simple journey. The extreme disparity in the respective positions of these patients finds expression in the case of one of the patients whose hope and chance to receive an organ transplant are shattered because she does not have access to a telephone and consequently fails to respond to the call to report to the hospital.
The novel accurately presents the clinical requirements relating to organ donation, as well as the tests that are conducted to determine donor compatibility. Anja’s father refuses to be tested to determine if he could be a compatible kidney donor for his daughter, whereas her young brother is petrified at the thought that he may need to donate one of his kidneys should he be found to be a suitable donor. These examples illustrate the tension that exists between exercising one’s autonomy to donate an organ on the one hand and the moral obligation to save a patient’s life by donating an organ altruistically on the other. Despite having the right to exercise one’s right to bodily and psychological integrity guaranteed by the Bill of Rights in section 12, such a right is affected and held in check by compelling conflicting considerations. Anja’s father decides that he should rather continue to maintain the family’s medical fund as the main member, although it is not clear what impact his absence from his job in Ethiopia may have on this medical aid benefits. One suspects that his contractual situation may be of such a nature that unpaid leave would be required should he be found to be a compatible donor, which may affect his ability to maintain his medical fund payments. It is also possible that the true motive for his refusal is that he prefers to take the route of managing his daughter’s illness from a distance, as closer contact may be too painful for him. It is ultimately up to the reader to decide whether his decision is morally justified or not.
Through the lens of the legal framework pertaining to organ donation and organ transplantation in South Africa and by comparing how Ackerman weaves the legal position into the narrative, the picture concerning the lacunae in the law relating to organ transplantation becomes apparent. The extreme shortage of transplantable organs is discussed, as well as possible solutions, including introducing an “opt-out” system in South Africa. The article concludes with viable recommendations that may assist in resolving the current legal impasse regarding organ transplantation. One of the recommendations is that the reporting of brain-dead patients be made compulsory and that such reporting be communicated to the organ coordinators in transplant units. The article also evaluates the Iranian regulatory model which permits the sale of kidneys and other organs within a well-defined framework incorporating clear limitations. Considering the statutory prohibition of any trade in human tissues and organs in South Africa, some reservations regarding the suitability of such a model for South Africa are expressed.
The article concludes with a summary of the value of Ackerman’s novel for the law and literature movement, including its benefits for improving the medical curriculum in South Africa. The novel’s depiction of the complex and sensitive medical topic of organ transplants, a field in need of significant legal reform, will hopefully attract the attention of the legislator soon.
Keywords: blood relatives; brain death; discrimination; kidney dialysis; kidney failure; law and literature; living donors; organ donation; organ transplant
- The diagram on this article’s featured image was created by Henry Gray and obtained from Wikimedia Commons. It is in the public domain. The book cover was supplied by Tafelberg (NB Publishers).