Knowledge of the Practice

organs anymore is the most often cited reason for engaging in the practice as the organs should be passed on to someone who can use them. This is furthermore tied to the rejection of financial incentives, as recycling does not entail wanting or getting anything in return for what you donate except perhaps a feeling that you are doing something good and worthwhile.

Present in the objectifying language is somewhat of a paradox; it is used by donors to distance themselves from their organs, thus making it easier to engage in the practice. However, the objectification of organs does not exert influence on perceptions regarding financial incentives. If organs were truly perceived as spare parts, accepting a form of payment seems a legitimate action, which it is not the case. This means that the objectifying language is only used to diminish the emotional aspects of the practice, it should not be perceived as the beginning of public acceptance of financial incentives.

4.5.2. The System

The number of organs available is not the only aspect of organ donation, the donors have little knowledge about. With the exception of Emma, 46, who used to work at a neuro-intensive care unit, there is little knowledge about the steps leading up to a transplantation, the system behind it and its procedures in general. Most donors have heard about the brain death criteria but otherwise knowledge is sparse. A few mentions the importance of pace; that organ donation and transplantation must happen fast. Others reflect on the importance of finding a match between donor and recipient. Besides that, the general level of knowledge is low, and the desire for obtaining knowledge is equally sparse:

I think that if I needed an organ, then I would care deeply about how the system works and if I at one point decided to give an organ, a kidney for example, then I would actively seek information. But otherwise, heck, there are so many things that I don’t know how works and I’m fine with that.

(Thea, 43)

When asked how much they know about the transplantations system and the steps leading up to the donation, the answers are very similar: “nothing at all” (Mike, 35), “practically nothing” (Thea, 43), “it’s limited, what I know about it” (Rita, 55). Despite not knowing much, there is consensus among the donors that they have sufficient knowledge, as expressed in the quote above and by Mike, 35, who says, “I’ve got the information I need”. Lucas, 67, acknowledges that he does not know anything about it but maybe he should. He continues by saying:

I haven’t looked if the Danish Council on Ethics has had a debate about it. I don’t know which guidelines the different regions follow. I don’t know how it’s discussed when studying medicine. I haven’t even bothered to check out the official organ donor webpage to see if there are any links to discussion or the sorts about how the different situations are dealt with ... how does the medical staff handle it and how do they handle the relatives in the situation? I don’t know anything about that.

(Lucas, 67)

4.5.3. Trust

The absence of knowledge does not influence the donors’ perceptions of or interaction with the system, as their participation in the practice relates more to trust. All donors trust the system and

how it works, which is an important element holding the practice together. Thus, trust has replaced knowledge as the key competence in organ donation. As expressed by one donor:

You can say that there’s a trust in the system, but I’ve got nothing to base it on.

There are stressed situations everywhere and mistakes are made everywhere … yes [I have trust] because I’ve no reason to be distrustful.

(Lucas, 67)

Magnus, 27, says that his knowledge about the system and procedures is very limited, but he trusts the system, and it was on that basis he made the decision. Likewise, both David, 67, and Marc, 23, say that they have no reasons not to trust the system, while Mike, 35, unequivocally answers “yes”

to having trust, despite acknowledging seconds earlier that he knows nothing about the system or the transplantation process. As noted earlier, there is a belief that helping people in need is an inherent trait in Danish society, and one donor also points to the fact that the Danish system works well in general, so why should that not apply to the area of organ donation. Donors trust that the medical system works well and in alignment with ethical protocols, which is referred to as

‘competency trustworthiness’ in the framework of trust set forth by the Institute of Medicine (2006, p. 112).The framework also stresses that the processes and protocols used to obtain organs must be perceived to be impartial, meaning that helping recipients should not outweigh caring for patients who could potentially become donors. Considerations about impartiality are undertaken by a few donors:

That’s what you often hear, at least what I’ve heard … that you get in a traffic accident where there’s sudden death and then we take your organs (laughter).

When you first hear that story, you think ‘hmmm… maybe things happen too quickly in the chaos of such an accident, right?

(Lisa, 27)

David, 67, also says, “there must be one doctor who goes in and then another who doesn’t know the diagnosis made by the first doctor”. When asked if he thought this is how it actually happens, he says, “hell no, I don’t think so”. Yet, he trusts the system, as he has no reason not to. Despite such reflections about the ethical reliability of the system, trust prevails and is instrumental to the existence of the practice: “I have to [have trust], otherwise I shouldn’t have said yes” (Thea, 43).

It is quite interesting, how trust in the system provides the practice with legitimacy instead of knowledge about how organ donation and the transplantation actually take place.

Knowledge is an important part of any social practice and according to the Institute of Medicine (2000, 2006), knowledge is the foundation of trust in organ donation. In order to establish the required level of trust, all parties to the donation must have knowledge about the protocols. This knowledge is a prerequisite for relying on the fact that the system will act in accordance with ethical norms. However, donors do not have a lot of knowledge about organ donation and the processes, nor do they necessarily want more knowledge and information. They simply trust the system. If the donors were to obtain more knowledge, it may actually challenge the trustworthiness of the practice. According to the Framework of Trust, normative trustworthiness is about transparency and individuals knowing, understanding and appreciating the system’s adherence to social, ethical and legal norms (Institute of Medicine, 2006). An example of such a norm is the system’s adherence to the deceased’s preferences. Learning that doctors always ask the family, even when the donation is non-contingent on family’s acceptance, might breach this trust. Especially for those donors who have made their donation non-contingent on the family’s acceptances.

Nevertheless, trust is a fundamental element in the practice, and it most likely originates in a general understanding of a well-functioning Danish welfare system. Thus, trust is an instrumental competence to possess and fundamental for the continuous renewal of the practice. This also means that while many official initiatives and policies rest on the assumption that education and information will increase the number of registrations and donations, profound knowledge is not found to be an inherent trait of the practice.