Scientific Papers

Mapping trust relationships in organ donation and transplantation: a conceptual model | BMC Medical Ethics

‘Trust’, ‘lack of trust’ and ‘mistrust’

Trust is an umbrella term that can be characterised as the belief that others (i.e. individuals, institutions) will behave as expected, which generates a positive emotion linked to a sense of security. The concept of trust is multifaceted [16] and can be approached from divergent perspectives [1]. From the perspective ofpsychology and political science, trust is conceived as a psychological event or a mental state of isolated individuals, that can be reduced to its cognitive content or to its behavioural expressions. In contrast, from a sociological perspective, trust is a property of collective units that is applicable to the relations among people rather than to their psychological states taken individually [17].

For the purposes of this article, we will assume, following [18], that trust is an essentialcondition and facilitator of social interaction and, in particular, cooperation. In this sense, Schilke defines it as “the willingness of an entity (i.e. the trustor) to become vulnerable to another entity (i.e. the trustee) taking. In this risk, the trustor presumes that the trustee will act in a way that is conducive to the trustor’s welfare despite the trustee’s actions being outside the trustor’s control” [19]. In the context of ODT, when the trustor is a deceased donor or their family, we should consider that it is not necessarily the trustor’s welfare that is at stake, but the trustor’s interests and values.

Trust has an important moral dimension because it involves an asymmetrical bilateral relationship of power and vulnerability between the trustor and the trustee. On the one hand, the trustor places theirself in a position of vulnerability to the discretionary power of the trustee, while on the other hand the trustee is morally bound by the trustor’s expectations to use their power responsibly [1].

We will assume that trustors are individuals or groups of people (e.g. potential individual donors, families, recipients, health professionals), whereas trustees can be either individuals, groups, or abstract entities such as institutions and organisations (e.g. the transplant system, policy makers). Trust can vary in intensity and nature depending on the relationship between the trustor and the trustee: it is not the same to trust a particular person, a professional role (e.g. nurse or doctor), or an abstract system [20]. However, for the sake of clarity and simplicity, we will not explore this further within this article.

Trust can be withheld without implying distrust or mistrustFootnote 2. One may withhold trust when the conditions for rational trust are unclear for a given person or situation [2].

Lack of trust is just the absence of trust, and trust can be absent without implying distrust. This may happen when one is indifferent or disengaged about a certain issue [1, 21]. However, as Griffith notes [22], “lack of trust is often framed as something that needs to be changed in individuals who do not trust rather than something that needs to change in providers and organisations that have not demonstrated that they are trustworthy”.

Unlike the absence of trust, distrust is a logical response based on scepticism, suspicions, and concerns. In healthcare, distrust can stem from the assumptions that providers or institutions may offer unequal or variable quality of care, and that the patient may receive substandard treatment [22]. In ODT, previous research has examined mistrust in relation to cultural, system, and medical factors [23, 24]. A common source of mistrust is the perception that doctors may not try to save a potential donor’s life or may declare them dead prematurely to obtain their organs [23, 25, 26]. This issue is especially relevant among minority communities – for example in the UK [7, 27,28,29]. However, these studies focus on mistrust in access to the transplant system and not the health system in general.

The elements of trust: ‘trustor’, ‘trustee’, and ‘objects of trust’

We propose that trust relationships have three essential elements: a trustor, an object (or content), and a trustee (Fig. 1). The trustor holds (and acts or behaves based on) a belief that something is or will be [true, accurate, fair, appropriate, useful, etc.], which relies wholly or partly on the trustee. The same object of trust may involve and be attributed to multiple trustees. For instance, respecting the deceased’s decision to donate (opt-in) or not donate (opt-out) organs may depend on the doctors, the family, and the government (through policies regulating individual consent and the family’s role in the decision). Moreover, a single trustee may be responsible for (i.e. be expected to deliver) multiple trust objects. For example, people may trust or distrust doctors to save their lives, respect their dignity and their bodies after death, and honour their wishes about organ donation.

However, trust involves not only the trustor and trustee (the person, group, or entity that is being trusted), but also the object of trust (the action or outcome that is expected or desired from the trustee). The object of trust varies depending on the context and the needs or interests of the trustor (the person, group, or entity that is placing trust). For instance, the trustor may trust the family for emotional support, but not for medical guidance. Or the trustor may trust the organ transplantation system for fair allocation of organs, but not for guaranteed success of the transplant.

Fig. 1
figure 1

The essential elements of a trust relationship

Trust relationships are not limited to dyadic interactions but often form complex networks that include multiple trustors, trustees, and objects of trust. In such a network, the same social actor can assume different roles as a trustor or a trustee, depending on their relationships with other social actors.

The ODT system is a interconnected matrix structure with many social players interacting with one another. This include: organ donors and their families, patients who need an organ, health professionals who care for patients and perform organ removal and transplantation, donation and transplantation system (DTS), abstract entity that regulates and coordinates organ procurement and allocation–, legislators who set the legal and ethical framework for the DTS, and society as a whole which isthe source and destination of donated organs. In turn, these stakeholders are part of a wider system, the health system, that covers all aspects of health care in a country or region.

In this article, we focus on the allocation of trust from the trustors to the trustees. However, the reverse perspective, from the trustees to the trustors, is also relevant to understanding how trustworthiness is established or maintained, and how it facilitates ODT. Yet, relationships of trust and trustworthiness are not necessarily symmetrical and can form different networks. Therefore, from the perspective of policymakers and institutional actors, who are the ultimate trustees, it may be useful to use a different approach.

Influencing factors

Trust relations, like almost any other socially determined relation, are hugely determined by personal views, values, and beliefs. Many features of the agents involved shape what is important to them, whom they trust for what, and the intensity and relevance of that relation. Although these features can be determinant and constituent, our model suggests treating them as influencing factors that exert an influence on these relationships. As it will be explained further below, our proposed model suggests that certain trust relationships are inherent to trust in ODT, and these influencing factors need to be considered as variables that can have extremely diverse effects and create a myriad of potential dynamic relationships.

In order to clarify how influencing factors can change the structure of a relationship, we can take the example of the trustor’s past experiences with health professionals. If somebody has had good or bad experiences in the past with a health professional, that can deeply affect their expectation on that professional’s future behaviour. That does not mean that the patient either will or will not trust the health professional to provide them with good care, but the relationship will probably be much stronger or weaker depending on this mediation variable. In this fashion, many other factors such as personal and religious beliefs, information spread by media, knowledge of the transplant system, and so on, have a strong role in changing the intensity and even determining the creation or destruction of trust relationships.

These factors are deeply contextual, but real trust relationships are rarely (if ever) fully independent of the reality in which the actors involved live. Analysing how trust relationships are affected by these influencing factors will help us show that even after conceptualising it, trust creates dynamic relationships that are deeply mediated and that can radically differ from their original status given different contexts. Thus, the mapping of trust relationships we offer up next should be understood as a model of common structures and it needs to be confronted with real scenarios to get an actual representation: cultural backgrounds, religious beliefs, personal values, public information, or past experiences are some of the many potential influencing factors that can have a great impact on the final outcome of trust relationships in real life. We will provide an example of this in Sect. 4.

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