"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

A 10-year analysis of organ donor referrals to a South African tertiary public sector hospital

Background. South Africa (SA) has one of the lowest deceased organ donor rates in the world (1.4 donors per million population), with thousands of patients awaiting solid-organ transplantation. In order to improve access to transplantation we have to clearly define the reasons for the low deceased donation rate, specific to the population we serve.Objectives. Review of actual donor statistics highlights our successes, yet is not able to contextualise the factors responsible for the unsuccessful conversion of referred organ donors to actual organ donors. In an attempt to identify key factors preventing referred donors from becoming actual donors, we analysed the donor referral patterns at our institution over a 10-year period.Methods. This was a retrospective descriptive study of consecutive deceased donor referrals at Groote Schuur Hospital, Cape Town, SA (from January 2007 to December 2016), utilising a regional donor referral registry. Qualitative and quantitative data were collected and presented as descriptive statistics and temporal trends.Results. Over the 10-year study period, 861 possible organ donors were referred, with a steady increase in the number of referrals over time. Of the referrals, 514 (59.7%) were eligible for donation of at least one solid organ. Of the 508 families that were approached for consent to donation, 342 declined consent for a variety of reasons, resulting in a consent rate of 32.7%. Ultimately, at least one solid organ was obtained from 159 of the 166 consented donors. Despite the increasing number of possible and eligible donors, a statistically significant decline in consent rate was observed over time (ptrend=0.023). Furthermore, increasing trends in medical (as opposed to trauma) (ptrend<0.001) and extended criteria (as opposed to standard criteria) donor referrals (ptrend<0.001) were observed over the 10-year study period.Conclusions. Donor referral patterns have changed over time, with a notable increase in medical and extended criteria donors. Despite the increase in possible and eligible donors, the consent rate has declined. Further qualitative and quantitative research studies are required to understand and address this trend.

Increasing deceased organ donor numbers in Johannesburg, South Africa: 18-month results of the Wits Transplant Procurement Model

In 2016, deceased-donor organ procurement at Wits Transplant, based at Wits Donald Gordon Medical Centre in Johannesburg, South Africa (SA), was in a state of crisis. As it is the largest-volume solid-organ transplant unit in SA, and as we aspire to provide transplant services of an international standard, the time to address our procurement practice had come. The number of deceased donors consented through our centre was very low, and we needed a radical change to improve our performance. This article describes the Wits Transplant Procurement Model – the result of our work to improve procurement at our centre. The model has two core phases, one to increase referrals and the other to improve our consent rates. Within these phases there are several initiatives. To improve referrals, the threefold approach of procurement management, acknowledgement and resource utilisation was developed. In order to ‘convert’ referrals into consents, we established the Wits Transplant ‘Family Approach to Consent for Transplant Strategy’ (FACTS). Since initiation of the Wits Transplant Procurement Model, both our referral numbers from targeted hospitals and our conversion rates have increased. Referrals from targeted hospitals increased by 54% (from 31 to 57). Our consent rate increased from 25% (n=6) to 73% (n=35) after the initiation of Wits Transplant FACTS. We hope that other transplant centres in SA and further afield in the region will find this article helpful, and to this end we have created a handbook on the Wits Transplant Procurement Model that is freely available for download (http://www.dgmc.co.za/docs/Wits-Transplant-Procurement-Handbook.pdf)

Reimagining liver transplantation in South Africa: A model for justice equity and capacity building – the Wits Donald Gordon Medical Centre experience

The challenge of providing effective and integrated liver transplant services across South Africa’s two socioeconomically disparate healthcare sectors has been faced by Wits Donald Gordon Medical Centre (WDGMC) since 2004. WDGMC is a private academic hospital in Johannesburg and serves to supplement the specialist and subspecialist medical training provided by the University of the Witwatersrand. Over the past 14 years, our liver transplant programme has evolved from a sometimes fractured service into the largest-volume liver centre in sub-Saharan Africa. The growth of our programme has been the result of a number of innovative strategies tailored to the unique nature of transplant service provision. These include an employment model for doctors, a robust training and research programme, and a collaboration with the Gauteng Department of Health (GDoH) that allows us to provide liver transplantation to state sector patients and promotes equality. We have also encountered numerous challenges, and these continue, especially in our endeavour to make access to liver transplantation equitable but also an economically viable option for our hospital. In this article, we detail the liver transplant model at WDGMC, fully outlining the successes, challenges and innovations that have arisen through considering the provision of transplant services from a different perspective. We focus particularly on the collaboration with the GDoH, which is unique and may serve as a valuable source of information for others wishing to establish similar partnerships, especially as National Health Insurance comes into effect

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

Reconceptualising Health Professions Education in South Africa

Cite: Academy of Science of South Africa (ASSAf), (2018). Reconceptualising Health Professions Education in South Africa. [Online] Available at: DOI http://dx.doi.org/10.17159/assaf.2018/0021This consensus study was initiated by ASSAf as a response to the ongoing challenge of shortages of healthcare professionals. The study was conceptualised following an ASSAf workshop on the Lancet report titled Health professionals for a new century: transforming education to strengthen health systems in an interdependent world. The study aims to address the full value chain in health sciences education from student selection, through pedagogical developments, unpacking of the current bottlenecks in the system and looking at how the future health sciences education system can be financed and regulated. Objectives of the study are to provide evidence-based information and recommendations to policymakers and relevant stakeholders on how health professional education might be transformed to improve the health of the nation. This includes the various professions in health. Some of the key findings of the study include: barriers in student section; inadequate production and retention of skilled health professionals; urban-rural maldistribution of graduates; core competencies’ challenges; internship and community-service obligations and transition; and shortcomings in financing of health sciences education. Recommendations on how to address the challenges are very practical. It is envisaged that policymakers and relevant stakeholders will implement these for the revitalisation of health professions education in order to improve health of South Africans.Stellenbosch University Rural Medical Education Partnership Initiative (SURMEPI