TIPOS DE INVESTIGACION

framework

6.1 INTRODUCTION

This thesis involves a number of ethical principles and frameworks, with the ethics of care as the main theoretical framework for the project. However, organ

transplant is imbued with ethical issues (Cox, 2014; Shafran, Smith & Goldfarb, 2015; Van Dijk, Hilhorst & Rings, 2014) and this chapter will discuss a number of these, with the ethics of care receiving particular detail.

6.2. PRINCIPLISM

Bioethics started to gain prominence in medicine in the 1970’s as it started to become clear that advances in medicine, the move towards patient-centered care and innovations in research and development presented a multiplicity of complex moral questions without straightforward answers. Over the past sixty years, theories of bioethics have been refined, with a number gaining particular prominence (Pellegrino, 2000). One such theory is that of principlism, the

brainchild of Beauchamp and Childress, first published in 1979 and refined over the years (Rauprich & Vollmann, 2011). Essentially, principlism is a set of four

normative moral considerations (autonomy, beneficence, non-maleficence and distributive justice) which are designed to guide medical decision-making. The principles are not mutually exclusive, and often need to be weighed against one- another (Rauprich & Vollmann, 2011). My thesis will show that in transplant these principles are particularly important and relevant, and can be applied and

considered at different points of the transplant process. Although a number of other ethical theories may have been useful in explaining my findings, principlism is the most encompassing and frequently utilised one in clinical practice (Muirhead, 2011).

6.2.1. Autonomy

The principle of autonomy is related to self-determination, and advocates that individuals ought to make decisions which are consistent with the manner in which they have chosen to live their lives, for instance, considerations of religious

practices or financial limitations may be of relevance (Beauchamp and Childress, 2001; Gillon, 2003). In the healthcare context, autonomy can be linked to informed consent (Veatch, 1987), where it is necessary that a patient is apprised of all

relevant information regarding the management options available to enable him/her to decide which would be the most appropriate one. In terms of organ transplantation, an individual may feel that donating the organs of a loved one conflicts with their personal religious practices (Falahati, 2014) and, in exercising autonomy, may decide that organ donation would not be morally correct. The role of the health professional in this case is to respect and facilitate the decision of the autonomous agent – who, in the case of a cadaver donor, would be the donor family. In bioethics, decisional autonomy is closely linked with informed consent because both concepts stipulate that an agent must be provided with sufficient information to make a decision (Veatch, 1987). Thus, in South Africa, the legal requirement of informed consent could be seen as a practical extension of autonomy.

6.2.2. Beneficence

In bioethics, the concept of acting in the best interests of the patient is an

important, though not overriding, ethical factor (Beauchamp & Childress, 2001). Historically, acting in the best interests of the patient was often linked to

paternalism, and hence the notion has become somewhat tainted. Furthermore, with the current era of patient-centred care, autonomy and informed consent appear to be the primary locus of bioethical discourse (Gillon, 2003). However, healthcare interventions cannot take place without some consideration as to the best interests of the patient, and without keeping the patient in mind. In Gauteng transplant, my data suggests that the patient seems to be forgotten sometimes.

6.2.3. Non-maleficence

Non-maleficence means ‘the doing of no harm’ and the principle can be related back to the earliest version of the Hippocratic Oath (Berdine, 2015). Practically speaking, the non-maleficence principle must be weighed against the others (Beauchamp and Childress, 2001). Hence, for example, when considering non- maleficence, it may be less harmful for a devout Jehovah’s Witness patient to accept the consequences (possibly including death) of refusing a blood transfusion – provided the decision was made autonomously – rather than causing the patient harm by forcing him or her to undergo the procedure.

6.2.4. Distributive justice

According to Beauchamp and Childress (2001) the principle of justice requires the fair distribution of medical risk and benefits, medical costs and resources. It advocates that like patients should be treated in a like manner (Beauchamp & Childress, 2001). In the South African context, when one consider the inequalities found both across society and within the healthcare system, as described in Chapter 1, it is clear that benefits and risks are not equally shared, and that individuals are not equally treated, as, for example, in the way members of a medical aid scheme get better access to resources. When it comes to transplant, it is not only medical resources which should be distributed in a just manner, but also the organs themselves.

6.3. THEORETICAL FRAMEWORK – THE ETHICS OF CARE

The concept of care permeates the health setting. It is for this reason that people talk about healthcare and healthcare professionals. Care is the provision of

services necessary to promote health, welfare or a similar desirable state. It is also defined as a feeling of concern for, or an interest in, a person or object which necessitates looking after them/it. Care is a societal ideal, and patients in a health interaction expect to receive fair, equitable and just care. However this literature review has shown that the South African health system is characterised by

to, and provision of, healthcare services. It could even be argued that the South African health system is not very caring.

This section on the ethics of care will show that good caring must be taken into account in interpersonal relationships and that it cannot be rules-based. As the previous chapter argued, communication provides the foundation of these relationships in healthcare. Through communication, healthcare provision and receipt is realised. It follows, then, that organ transplant, which involves significant communication across a myriad of interpersonal relationships, may be especially interesting from the point of view of ethics of care arguments.

This chapter will demonstrate that transplant makes demands of care at two levels. Firstly, organ transplant normatively requires a distributive justice which allows everyone fair and equal access to healthcare services. Secondly, organ transplant requires resources – organs themselves – which are obtained through an act of caring, often in the context of death and grief. My thesis will show that ethical care becomes problematic because expectations of care cannot be realised within an unequal transplant context and it will show that an institutional ethics of care has not fully developed in Gauteng transplant.

As the previous chapters of this thesis have shown, transplant involves a large number of people, and amongst them, a large network of interactions and relationships. These interactions and relationships play out in the Gauteng healthcare system, primarily across a number of hierarchical health institutions. These relationships contain within themselves different expectations and involve many different personalities. This section will demonstrate that as a situational moral theory, which considers individual relationships and their context in hierarchical institutions, the ethics of care can provide an insight into the implications of this research.

Over the last few decades the ethics of care has become a prominent moral theory, thought to offer a viable alternative to rule-based theories like deontology and

utilitarianism15 (Held, 2006). Held (2006) and van Bogaert (2006) agree that the ethics of care is rooted in femininity, noting that kindness, empathy and caring for others suggest the importance of relationships and connections amongst people. The expression of these values is dictated by emotion and personal understanding, qualities commonly associated with women. Values such as autonomy, fairness and normative justice are considered to be more masculine ones. They focus on separation, and the application of rules-based reasoning on a universal scale (Van Bogaert, 2006).

I now go on to discuss the philosophical development of the ethics of care,

emphasising the work of Joan Tronto, which is of particular relevance for my thesis. The ethics of care will then be integrated into the framework for the research argument.