"Hey sister! where's my kidney?" : exploring ethics and communication in organ transplantation in Gauteng, South Africa

A thesis submitted to the Faculty of Humanities, University of the Witwatersrand, Johannesburg in fulfillment of the requirements for the degree of Doctor of Philosophy December 2015Introduction South Africa is characterised by numerous dichotomies and diversities, within which its two-tier healthcare system operates. An under-resourced state sector serves a majority of the population and a resource-intensive private sector serves a small minority. Within the constitutional framework of human rights and distributive justice there are nevertheless expectations of fair and equal access to healthcare services. There is furthermore an expectation of quality care across the health system, in spite of a number of systemic challenges related to staff and equipment shortages, unrealistic working hours and poor working conditions. Organ transplant is available to different degrees within the South African healthcare sector. Whilst transplant programmes are burgeoning internationally, cadaver transplant numbers in South Africa have decreased over recent years as donor organs have become increasingly scarce. Current research suggests that these challenges to transplant in South Africa arise from aspects of personal and cultural beliefs, illegal transplant practices and resource constraints - which all serve to compromise the ethical implementation of transplant services in the two-tier healthcare system. The impact of interprofessional communication and transplant professional–patient communication has not been previously researched in South Africa. However, research into other healthcare issues has shown that communication is vital to the ethical provision of healthcare services, especially those which involve patient-centeredness and multidisciplinary interaction. Transplant involves a significant amount of communication within a particularly large network of recipients and their families, cadaver donor families, living donors and a range of transplant professionals. This communication seems a vital part of the transplant process, disseminating information which role-players need in order to promote favourable outcomes. Given the extensive networks involved in the transplant process, communication would seem to be a fertile area for research. This study aimed to explore communication in organ transplant in Gauteng province, South Africa. It considered both interprofessional communication and communication with patients as this took place within the hierarchical healthcare system and throughout the transplant process. An ethics of care framework was utilised in order to account for the expectations of care which South Africans confer upon their health system. Methods The study took place in the Gauteng province of South Africa across six healthcare institutions. Both the state and the private sector were equally represented. Altogether, thirty in-depth interviews with transplant professionals, two focus groups with transplant coordinators, two interviews with cadaver donor families, and one focus group with living kidney donors, were conducted. Thematic analysis and triangulation of the data utilising Braun and Clarke’s (2006) principles revealed three main themes relating to context, communication with patients, and interprofessional communication Findings The South African transplant context is complex and multifaceted, shaped by both the patients’ expectations of care and the transplant professionals’ perceptions of care. These expectations and perceptions are influenced by personal beliefs, suspicions of biomedicine, the media, and resource inequalities which pose challenges to accessing transplant services. The transplant context is characterised by ethical dilemmas relating to distributive justice, as questions about resource distribution and allocation of donor organs are raised. Transplant communication is influenced by context and varies depending upon role-players in transplant and the different phases of transplant. Demands for care by those hoping to receive an organ had a noticeable influence on transplant professional-potential recipient communication in the pre-transplant phase, a period when emotions of desperation and uncertainty were prominent. By the time recipients had received their organ and entered the more stable post-transplant phase, a relationship of trust developed in which communication was regular and caring roles seemed fulfilled. The opposite trend was evident in communication between transplant professionals and donor families. This was characterised by notions of care in the pre-transplant phase, contrasting with a perception amongst donor families that care was sometimes overlooked in the post-transplant phase - a time often imbued with chronic uncertainty. Even in the pre-transplant phase numerous ethical issues surrounding autonomy, decision-making and informed consent proved to complicate and challenge transplant communication. Interprofessional communication was shaped by hierarchical institutional organisation, a lack of continuity of care, and resource constraints, all of which challenged transplant professionals seeking to provide care, and sometimes resulted in aggressive interchanges. The pressure to procure an organ timeously – which could result in patient care and professional respect being somewhat disregarded – could so compromise interprofessional communications that moral distress was created. Furthermore, as a result of miscommunications, an ethical vacuum where the best interests of patients in the transplant process were not, apparently, a foremost consideration, was identified. Conclusion Transplant is a highly complex process requiring a number of different communication styles and skills and accompanied by intricate ethical challenges. Although transplant professionals seemed cognisant of the need for careful communication, inequalities, resource scarcity and conflict intervened to create a space for moral distress and uncertainty in which communication was affected, and the provision of care was the casualty. Appraising results within an ethics of care framework suggests that transplant in Gauteng cannot be considered to be a process fully informed by the imperative of care. The ethics of care proved to be a helpful framework for understanding transplant communication in Gauteng because of the way it accounts for interpersonal relationships - fundamental to the transplant process - whilst also emphasising the importance of resources necessary to provide good care. It was concluded that in the current environment, where there is little legal direction or political buy-in, transplant in Gauteng will be unable to reach its full potential.MT201

Enhancing the doctor-patient relationship: living, dying and use of the living will

M.Sc. (Med. (Bioethics and Health Law)), Faculty of Health Sciences, University of the Witwatersrand, 2008.The research aims to establish whether processes around the consideration and execution of the living will help enhance the doctor-patient relationship. Studies have shown that the living will is not used frequently, and that the doctor-patient relationship is often deficient. The research explores the two primary topics – the living will, and the doctor-patient relationship – separately. Each primary topic is approached via a consideration of the relevant literature, and each is then analyzed from a theoretical–ethical point of view. A synthesis of these separate investigations is presented. This synthesis concludes that the living will can help enhance the doctor-patient relationship

Rethinking responsibility in radiography: Some ethical issues in South Africa

The field of radiography in South Africa is complex and presents a multitude of ethical issues. The discipline is often regarded as a supporting function in the healthcare chain, and a stepping-stone in the diagnostic process. This status of the discipline seems to have left many radiographers in a position of substantial confusion. In the course of numerous bioethics presentations for radiographers in South Africa, several ethical and legal issues have recurrently come to my attention. This article aims to address some of these issues and to offer ethically and legally acceptable solutions. The proposed solutions are not absolute – they are based on personal discussions and experiences – and their practicability needs to be scrutinised. Consequently, this article should be seen as a starting point only

Attitudes to organ donation among some urban South African populations remain unchanged: A cross-sectional study (1993 - 2013)

Background. A 1993 paper in the SAMJ suggested that public attitudes to organ donation in South Africa were positive. However, statistics reveal a decline in the annual number of transplants in this country.Objective. To repeat the 1993 survey as far as possible and determine whether public attitudes to organ donation in some South African populations have changed over the past 20 years.Methods. The 1993 study was replicated in 2012 to generate a current data set. This was compared with the raw data from the 1993 study, and an analysis of percentages was used to determine variations.Results. Generally attitudes to organ donation have not changed since 1993, remaining positive among the study population. However, individuals are significantly more hesitant to consider donating the organs of a relative without being aware of that person’s donation preference. Individuals in the black African study population are currently more willing to donate kidneys than in 1993 (66% v. 81%; p<0.0001), but less willing to donate a heart (64% v. 38%; p<0.0001, a liver (40% v. 34%; p<0.036) and corneas (22% v. 15%, p<0.0059).Conclusions. Publicity campaigns aimed at raising awareness of organ donation should emphasise the importance of sharing donation preferences with one’s family in order to mitigate discomfort about making a decision on behalf of another. These campaigns should be culturally and linguistically sensitive. The study should be repeated in all populations over time to continually gauge attitudes

Perceptions of nurses’ roles in end-of-life care and organ donation – imposition or obligation?

South Africa has a rich organ-transplant history, and studies suggest that the SA public supports organ donation. In spite of this, persistently low donor numbers are a significant challenge. This may be due to a lack of contextually appropriate awareness and education, or to barriers to referring patients and families in clinical settings. It may also be due to ad hoc regulations that are not uniformly endorsed or implemented. In this article we present the findings of a study in Johannesburg that explored the attitudes and roles of nurses in end-of-life care and organ donation. A total of 273 nurses participated. Most were female and <50 years old. The majority expressed positive attitudes towards both end-of-life care and organ donation, but there was ambiguity as to whether referring patients and families for these services was within nursing scope of practice. The vast majority of participants noted that they would refer patients themselves if there was a mandatory, nationally endorsed referral policy. These findings have implications for clinical practice and policy, and suggest that the formulation and implementation of robust national guidelines should be a priority. Because nurses would follow such guidelines, this might lead to an increase in donor rates and circumvent some uncertainty regarding referral

Methods and reporting of kidney function: a systematic review of studies from sub-Saharan Africa.

Globally, chronic kidney disease (CKD) is an emerging public health challenge but accurate data on its true prevalence are scarce, particularly in poorly resourced regions such as sub-Saharan Africa (SSA). Limited funding for population-based studies, poor laboratory infrastructure and the absence of a validated estimating equation for kidney function in Africans are contributing factors. Consequently, most available studies used to estimate population prevalence are hospital-based, with small samples of participants who are at high risk for kidney disease. While serum creatinine is most commonly used to estimate glomerular filtration, there is considerable potential bias in the measurement of creatinine that might lead to inaccurate estimates of kidney disease at individual and population level. To address this, the Laboratory Working Group of the National Kidney Disease Education Program published recommendations in 2006 to standardize the laboratory measurement of creatinine. The primary objective of this review was to appraise implementation of these recommendations in studies conducted in SSA after 2006. Secondary objectives were to assess bias relating to choice of estimating equations for assessing glomerular function in Africans and to evaluate use of recommended diagnostic criteria for CKD. This study was registered with Prospero (CRD42017068151), and using PubMed, African Journals Online and Web of Science, 5845 abstracts were reviewed and 252 full-text articles included for narrative analysis. Overall, two-thirds of studies did not report laboratory methods for creatinine measurement and just over 80% did not report whether their creatinine measurement was isotope dilution mass spectroscopy (IDMS) traceable. For those reporting a method, Jaffe was the most common (93%). The four-variable Modification of Diet in Renal Disease (4-v MDRD) equation was most frequently used (42%), followed by the CKD Epidemiology Collaboration (CKD-EPI) equation for creatinine (26%). For the 4-v MDRD equation and CKD-EPI equations, respectively, one-third to one half of studies clarified use of the coefficient for African-American (AA) ethnicity. When reporting CKD prevalence, <15% of studies fulfilled Kidney Disease: Improving Global Outcomes criteria and even fewer used a population-based sample. Six studies compared performance of estimating equations to measured glomerular filtration rate (GFR) demonstrating that coefficients for AA ethnicity used in the 4-v MDRD and the CKD-EPI equations overestimated GFR in Africans. To improve on reporting in future studies, we propose an 'easy to use' checklist that will standardize reporting of kidney function and improve the quality of studies in the region. This research contributes some understanding of the factors requiring attention to ensure accurate assessment of the burden of kidney disease in SSA. Many of these factors are difficult to address and extend beyond individual researchers to health systems and governmental policy, but understanding the burden of kidney disease is a critical first step to informing an integrated public health response that would provide appropriate screening, prevention and management of kidney disease in countries from SSA. This is particularly relevant as CKD is a common pathway in both infectious and non-communicable diseases, and multimorbidity is now commonplace, and even more so when those living with severe kidney disease have limited or no access to renal replacement therapy

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