This brief report explores the establishment of a federal-level policy in South Africa that would serve to increase participation in organ donation. It considers the independent and dependent variables by which the study may be characterized and then serves to establish causal interdependencies and identify attendant rationales. Withal, it explores the importance of the problem to the future health and viability of the populace.
The nearly sixty million residents of South Africa (World Health Organization, 2020) are in the throes of a healthcare crisis. The breakneck efforts that have been directed at broadly improving the standard of living in the post-Apartheid years run afoul of both the demographic variability of the population and the continued profound deficiency of much of its logistical infrastructure. The most jarring healthcare metric is the fact that the probability of South Africans dying between ages fifteen and sixty exceeds 30 percent (Countries, 2020), a statistic that can likely be improved by readier availability of healthy donor organs for transplant into diseased individuals.
South Africa’s organ transplant legislation is vague, under the National Health Act, the Act states that a person can donate their organs under oral consent in the presence of two witnesses. The donor is required to specify a donee. Failure to do this will result in the donation being void or null, the act then contradicts that, if a donee is not specified, then the nearest place to where the donor’s body is will receive the organ. The Act does not address organ donor referrals, a national referral policy on organ donation is important. The act does not adequately address the procurement of donor organs from people who are deceased. And if the person has signed to be a donor, the patient’s family, can reverse the decision under the current system. Hence, it is important to include that a patient’s family has to be informed when consent to donate is signed. However, Labuschagne, (2013) argues that the wishes of a donor family will still be considered for the following reasons.; Firstly, common law provides certain rights to a family in terms of the remains of a deceased relative. Secondly, transplant professionals are hesitant to proceed without family consent for emotional reasons. Widespread ignorance about organ donation is contributing to a major shortage of organs for transplant in South Africa, especially for patients suffering from kidney failure, most of whom are turned away from dialysis units.
Organ transplantation in South Africa is low compared to other countries with the same economic capacity. A small percentage, specifically under 0.2%, of the population constitutes registered donors (Western Cape Government, 2019). Accordingly, the number of organ donors in South Africa has limited the supply of vital organs, such as hearts, lungs, kidneys, and livers to needy patients. The limited supply of organs in South Africa is a serious issue, considering that over 4000 people are waiting for a corneal transplant or life-saving appendage based on information from the Organ Donor Foundation (ODF) (Western Cape Government, 2019). The most affected patients due to the challenge of the current limitation on organ supply are those with renal failure. According to Muller (2013), more than 5000 patients across South Africa suffer from renal failure, with half of them in need of transplantation.
The South African Healthcare system
In South Africa, inequalities exist in socio-economic status in healthcare, post-apartheid South Africa across the nine provinces (McIntyre, Gilson, Wadee, Thiede, & Okarafor, 2006). Prior to 1994, South Africa’s healthcare system was divided along racial lines, one system was highly resourced and benefited the white minority, the other under-resourced and was for the black majority (National Department of Health, 2011). The Healthcare system was characterized by racial segregation and systematic fragmentation, with 14 healthcare departments. Primary healthcare services were underdeveloped and underfunded among the black population (Coovadia, 2009).
Fig. 1: Provinces and Major Cities of South Africa
Due to the effects of end-stage renal failure, kidney disease has developed into a severe health concern increasing mortality rates. Specifically, renal failure accounts for nearly 1000 deaths per million population (Moosa, 2019). Over the last twenty-five years, approximately 7000 kidney transplants were carried out in South Africa. Also, the general transplant rate averaged at 6.4 per million population (Moosa, 2019). Even though the number of these processes indicates an increase in kidney transplants in the public sector, research has shown that the overall rate of organ transplantation in South Africa has declined (Moosa, 2019). While the number of organs available for other conditions is also low, patients with kidney diseases are highly vulnerable to the risks of morbidity and mortality, especially if the conditions are chronic, in December 2015, they were 10 360 patients on dialysis (South African Renal Registry, 2015). Therefore, the implications for persons with end-stage renal failure are adverse.
There are eighteen transplant centers in South Africa. Of these, eight are state-based and ten are private. Each center offers different types of transplants, which leads to inequalities to access (Muller et.,2015).
Of the eighteen state transplant centers in the country, eight are state-based and the other ten is private (Organ Donor foundation), one offers adult heart and liver transplant services only, this is based in the Western Cape. The location in the Western Cape implies that state patients cannot access these services anywhere else in South Africa. Adult heart and liver transplant services are provided at four private transplant centers, across South African metropolitan areas. The pediatric state-run heart and liver transplant center is based in the Western Cape, which is also challenging for patients to access these services. The current gap between patients who need organs, there are currently over 4000 patients waiting for an organ (Organ Donation Foundation, South Africa) and available donors can be bridged by raising awareness about organ donations, along with ethical and legal fundamentals.
The Organ Donation Foundation (ODF) in South Africa is the national umbrella body for promoting organ and tissue donation, the organization plans and implements education and publicity programs designed to raise awareness to the South African population, about the needs and benefits of organ donation and transplantation, and this organization also educates medical professionals to achieve a more efficient referral process.
Although (Pike et al. 1993) reported that 89 percent of whites are willing to donate organs, the more critical statistic is that only 76 percent of urban blacks express such willingness, given that the population is 81 percent black and 70 percent urban (South Africa, 2019). The situation is depicted in the following pie chart:
Fig 2: Statistics for Willing Donors Based on Race
Note an additional, dire implication of the chart as far as social determinants of health are concerned. Specifically, the factors that may lead to the need for fresh organs ready for transplant are the same factors that imperil the facile availability of such organs in the first place. For example, alcoholism that is more prevalent in the black townships (McCabe, 1982) leads to liver dysfunction, which means that the pool of healthy livers potentially available for transplant into needy patients is concomitantly reduced. Predisposition to donate organs varies strongly across geographic origin and religious beliefs and relations with socio-demographic, social integration, and informative variables.
The establishment of a federally endorsed policy aimed at increasing organ donation rates is dependent upon several factors. The first is the education of the nation’s rural black citizens to ensure that they understand the importance, the physical details, and the ultimate ramifications of organ donation. Unfortunately, at a societal level, socio–cultural practices do play a role in the shortage of donor organs, cultural aspects of people or a community influence the decisions that they take regarding organ donation (Etheredge, 2019).
Religious teachings have a profound effect on attitudes on organ donation. Muslims and Jews cannot donate their organs because of religious laws. The donation of a part as non-integral and readily harvested as a cornea is an anathema to such persons, who insist that such donation would render them unable to “see heaven” (Soy, 2015). Many African cultures are opposed to organ donation because it is believed that the deceased will join his or her ancestors in the life after (Bhengu and Uys, 2004). If an organ is donated, the ancestors will not be happy and the spirit will haunt the family
One concomitantly expects that some donors would be discouraged by the possibility that their organs would be donated across racial lines, which many would find flatly unacceptable in this profoundly racially polarized land (“South Africa’s,” 2018). Even if the effects of such toxic internecine relations could be mitigated, there are still the practical logistical details of getting an organ donation plan off the ground. In the United States, for example, organ donation is often prearranged by state governments through driver license registries (“Fast Facts,” 2020). However, this approach will not suffice among the highly populated “townships” where many of the majority-black residents find it an insurmountable challenge to qualify for a driver’s license in the first place (Wines, 2007).
As far as the establishment of a nationally sponsored organ donation program is concerned, the most important variables are to be identified from the perspective of quantitative evaluation of prospective programs. Perhaps the most important pendent variable is how many South Africans are within the scope of the intended outreach mechanisms. For example, while outreach campaigns based upon social media may be highly efficient, they would have difficulty reaching impoverished black South Africans, particularly in rural areas where Internet access is necessarily constrained (“Ideas,” 2018).
Even so, social media websites can readily be outfitted with metrics that can be consulted to evaluate the size of the population contingent reached by their messages. Given the relative “weight,” so to speak, of life-giving organs such as hearts or livers as opposed to superficial ones such as corneas, it would be judicious to refine the independent outreach variable into various categories so that the relative success of various constituent initiatives can be contrasted. The attendant dependent variables are clearly the rates at which persons contacted via the federal outreach initiative consented to donate one or more of their organs. Other variables that play a determining role in organ donation are without devoting more protracted effort to the design of the federal organ donation encouragement campaign. Informative variables are equally important, knowledge of patients who need a transplant, donor knowledge, and sources of information about organ donations, should be available.
Several laws’ provisions and general guidelines regulate organ donation across the world. Laws and policies governing the use of organ transplantation are changing in response to sensitivity to ethical concerns and the increasing shortage of organs. Clinicians and lawyers should write a clear and supportive legal framework governing organ procurement and transplantation, especially at a time when people are questioning the legitimacy of organ procurement. After reading through different literature, it is evident that the subject of organ donation has been controversial. It is important to engage different teams in the process of organ donation, such as the donors, the potential recipients, and other healthcare professionals, to avoid any controversies regarding any new laws. Care of a living patient who will be a donor is important, and donation laws in a country will have an impact on organ donation rates.
In South Africa, the legislative framework follows a hierarchal structure aligned with the government (national, provincial, and local), which is responsible for applying and monitoring legislation with the overarching constitution as the Supreme law. The control and use of human tissue in South Africa are primarily governed by the National Health Act. According to Burris et al. (2016), good policy ideas or model laws at times lie dormant for several years until thorough research is done to define the problem to be solved. The problem at hand is the major shortage of organs for transplant in South Africa, particularly for patients suffering from kidney failure, most of who are turned away from dialysis units. This problem is majorly attributed to widespread ignorance about organ donation in South Africa. However, with good national policy in place, an increase in participation in organ donation could be witnessed. The creation of such a policy should be guided by Scott Burris’ “5 essential public health law services” framework. This framework is as shown below.
Fig 3: “5 Essential Public Health Law Services” Framework
Source: Burris et al. (2016).
Ensuring Access to Evidence and Expertise
The first step in creating the said national policy in South Africa is to identify a policy with a reasonable chance of making a difference from political, legal, and epidemiologic perspectives. Creating a viable policy will require the policymakers, practitioners, and advocates involved in the process to have access to relevant evidence and expertise. The development of policy entails more than just having hope that stakeholders responsible for developing the policy will find the needed research and experts. Instead, it requires the creation of relationship networks that maintain ongoing research and that are ready to ensure the initiation of new research as needed, taking into account the potential policy demands.
Designing Legal Solutions
A major public health law service is the translation of a policy solution into a technically sound and politically acceptable legal form. At this stage of designing legal solutions, the focus must be on gaining maximum compliance, albeit with minimal enforcement. The design must also be well-calculated to ensure that potential legal challenges are avoided. It is critical to involve lawyers in the designing of legal solutions, and they may also serve as counsels to health agencies involved in the creation of the policy. Lawyers may also serve as counsel on legislatures and other government agencies that form part of the policy creation process. Lawyers critically assess the authority of policymakers.
Engaging Communities, Forging Partnerships, and Building Political Will
Although they may be armed with solid legal strategy and text during the creation of a policy, policymakers often face bigger challenges in ensuring that the legal intervention is put down onto books. In this stage, it is important to take into account the experience of partners in the areas of community engagement and advocacy. One of the most difficult phases of the policy process is building understanding and support. When building understanding and support, the focus must be on the development of political will for action among stakeholders. Important considerations in this regard may include educating the public about the problem and proposed solutions, working closely with the community, and striving to build coalitions.
Enforcing and Defending Legal Solutions
For a legal intervention or policy to succeed, enforcement and compliance are fundamental. Commitment and effort in designing, drafting, and winning enactment of a law may not be as fruitful as expected if getting the targets to obey or comply has not been thought out carefully, sufficiently resourced, or provided for in the policy or law. Certain interventions, such as smoke-free laws, often rely majorly on social norms and information; thus, they require minimal direct enforcement. However, other interventions, such as regulations on lead abatement in housing, often demand consistent inspection and carefully monitored enforcement to achieve intended objectives, such as reduction of child exposure. Enforcement is often difficult, and this must be taken into account in the creation of any policy.
Monitoring and Evaluating Policy
If a law or policy is important from a health perspective, public health officers, policymakers, and researchers must determine what the law or policy requires, where it is applicable, and whether it works or not. They must adopt the strategy of policy surveillance to achieve this objective. In most cases, policy surveillance helps with the generation of data important for the evaluation of laws and policies. Policy surveillance also helps in the measurement of the progress of legal campaigns as well as the provision of access to important legal information. By adopting policy surveillance, policymakers have access to traditional legal research that is in accordance with how public health monitors phenomena of interest.
This research will be undertaken across South Africa in nine provinces, including Western Cape, Northern Cape, Eastern Cape, North East, Free State, Gauteng, Kwazulu-Natal, Mpumalanga, and Limpopo.
This research targets South African citizens and health care stakeholders, including key government officials responsible for healthcare. It seeks to determine their views and opinions regarding how South Africa can create a national policy serving to increase participation in organ donation. Some of the organizations dealing with organ transplants targeted by this research include the Center for Tissue Engineering, Burn Care Trust, South African Transplant Sports Association (SATSA), Sunflower Fund, and South African Bone Marrow Registry.
For this study, we will rely majorly on purposive sampling. One of the major reasons for the use of this sampling design is the fact that the study is interested in South African organizations that play an instrumental role in organ transplantation. Once the organizations and government entities involved in organ transplantation are identified, individual respondents who will comprise majorly of community members and government officials responsible for healthcare will also be selected using the purposive sampling technique. Purposive sampling is also selected, given the researcher’s interest in respondents who can respond effectively to questions that will be asked. The study will also focus on individuals who have benefited from organ transplants before.
The study will rely on two data sources: primary and secondary data sources. Regarding primary data sources, the study will involve the administration of survey questionnaires to community members and people representing selected organizations and government agencies. The survey questionnaire will have open- and closed-ended questions. Concerning secondary data, the study will obtain existing information on the research topic from books, reports from organizations, and internet resources, such as websites.
The survey questionnaire will be mailed to the sampled respondents. For sampled respondents without access to the internet or access to email, the survey questionnaires will be issued face-to-face. For the selected government representatives, the survey questionnaires will be presented to them in person. The survey questionnaire that will be administered or given to respondents will be divided into two major sections: sections A and B. Section A will seek to collect demographic information of respondents. Section B will contain questions seeking to obtain detailed information on what respondents think about organ donation in South Africa, any policies or legislation related to organ transplant, and how South Africa can create a policy that serves to increase participation in organ donation.
For data analysis, the researchers will use the grounded theory method that will be instrumental in translating and understanding the data collected from respondents. The ground theory method will enable the researchers to analyze data as collected from specific respondents. This data analysis technique will also allow the researchers to use conclusions from each case to arrive at the findings and support the research hypotheses. For the grounded theory method, the researchers will have to follow three key steps in analyzing data obtained from respondents. First, the researchers and the entire research team will come up with memos that will help with an acquaintance with collected data from existing literature on the research topic. The second step will be the coding of the raw data collected from participants using hypothetical names of respondents. Respondents will be given anonymous names, such as Respondent 1, Respondent 2, up to the last respondent. The third step of data analysis will entail the categorization of codes and grouping the codes together. Subsequently, researchers will focus on the reduction of categories and the number of codes that will not be grouped. This will be important since having several categories could cause complications with regard to the interpretation of data.
Plan for Change Based Upon the Outcome of Project
It is expected that several aspects concerning organ donation or transplantation will change after the outcomes and recommendations of the project are implemented. First, it is expected that South Africans will be made aware of organ donation and why they need to take part. Second, the implementation of the project’s recommendations will require the involvement of stakeholders, including health care providers, South African citizens, organizations involved in organ transplants, and various government agencies dealing with healthcare. These stakeholders will have to work together in the implementation of the project outcomes.
A plan for change based upon the outcomes of the project will be developed to ensure the project’s success in the achievement of objectives. The plan will entail forming regional committees across the nine provinces of South Africa. The committees will comprise healthcare experts, citizens’ representatives, and government representatives. These committees will be charged with monitoring the continued implementation of the project’s recommendations for a year. If adequate monitoring continues for the proposed one-year period, an increase in participation in organ donation should be expected. Over the long term, a national policy should be formulated based on the project’s outcomes and recommendations. The policy will ensure that people become freer and more willing to participate in organ donation.
Since the plan for change will involve the implementation of the project’s recommendations and outcomes, key resources will be required. One of the key resources in the implementation of the project’s recommendations will be financial resources that will be paid to staff who will be tasked with educating and enhancing awareness among the general public in South Africa about the importance of organ donation. Financial resources would also be critical for paying committee members who will be tasked with overseeing the implementation of the project’s outcomes and recommendations. At the organizational level, particularly those dealing with organ donation or transplant, having adequate human resources will be important. After this study, it is expected that more people will visit various organizations and government agencies handling matters of organ donation. The anticipated increase in the number of individuals who will be willing to donate organs ought to be accompanied by an increase in staff handling them to enable the implementation and sustenance of the whole project. In the various organizations dealing with organ donation, it will be important for senior management to be involved in determining whether every procedure is followed and whether adjustments on how the recommendations are implemented are necessary or not.
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