Explorations about the Family’s Role in the German Transplantation System: Epistemic Opacity and Discursive Exclusion

ABSTRACT

With regard to organ donation, Germany is an ‘opt-in’ country, which requires explicit consent from donors. The relatives are either asked to decide on behalf of the donors’ preferences, if these are unknown or if the potential donor has explicitly transferred the decision to them. At the core of this policy lies the sociocultural and moral premise of a rational, autonomous individual, whose rights require legal protection in order to guarantee a voluntary decision. In concrete transplantation practices, the family plays an even more important role. Potential donors and their families decide while being embedded in relations, a point which does still not gain full recognition. This particular discrepancy between policy and practice creates conflicts, which remain taboos of academic inquiry and public discourse. Our analysis shows a plurality of the family’s role in the transplantation process, which reveals an inner tension of the organ donation system. This tension provokes epistemic opacity on the one hand and different collective strategies as responses to discursive exclusion on the other. In future deliberations about organ donation, it is important to create spaces for open discussion, but also practices of communicative engagement, which take care of the needs and emotions attached to taboos.

KEYWORDS:

• Organ donation
• critique
• Germany
• autonomy
• the family
• epistemic opacity

1. Introduction

‘Can New Organ Donor Law Save Lives?’. This headline of German Newspaper DER SPIEGEL (Schmergal 2020) was published at the peak of a major political debate: the amendment of the German Transplantation Act (Transplantationsgesetz) in February 2020. Members of Parliament (MEP) could decide between two different amendments, an ‘opt-out’ solution, in which citizens would be donors as long as they do not explicitly refuse, and a maintained decisional policy. The ‘decision solution’, as a variant of opt-in, will include policy changes such as counseling by general practitioners, a federal organ donation register as well as more education for doctors and the general public (Braun and Rahmel 2020).

The article in DER SPIEGEL did not only discuss the ethical arguments for and against an opt-out policy. It also presented the story of a 41-year-old woman, who received a lung transplant in 2012, terminally suffering from cystic fibrosis. Her story was complemented by a father’s experiences who lost his two children in a car accident. When being approached by the doctors, the father gave approval for his son’s organs to be donated. Both stories add up as personal perspectives within the political debate. In both cases, the donor’s family played a crucial role. The lung transplant recipient hoped that ‘her’ donor had consented to the explantation via a donor card, so that ‘her parents didn’t have to make this decision all by themselves’ (Schmergal 2020). The father says he was quite sure about his son’s preferences, him being a nurse and always approving the core ideas of transplantation medicine: ‘But I don’t know what I would have done if I hadn’t known what Felix wanted.’ (Schmergal 2020.) These stories illustrate the relevance of the family within the German transplantation systemwhen it comes to decision making: The ‘family acts as surrogate’ (Delgado et al. 2019, e115).

Within current German policy, relatives are either asked to decide on behalf of the donors’ preferences if they are unknown or if the potential donor has explicitly transferred the decision to them. At the core of this policy lies the sociocultural and moral premise of a rational, autonomous individual, whose rights require legal protection in order to guarantee a voluntary decision. However, this is only the abstract legal situation. In concrete transplantation practices, the family plays an even more important role, independent of the opt-in and opt-out policy. In practice, the potential donors and their families decide while being embedded in relations, a point which – after decades of transplantation medicine in Germany – still does not gain full recognition.

In this paper, we analyze this practice as an aspect of the transplantations system that is not fully disclosed in hegemonic discourse. With interpreting discourses as ‘hegemonic,’ we refer to theories based on Antonio Gramsci’s definition of hegemony as ‘the “spontaneous” consent given by the great masses of the population to the general direction imposed on social life by the dominant fundamental group; this consent is “historically” caused by the prestige (and consequent confidence) which the dominant group enjoys because of its position and function in the world of production’ (Gramsci and Hoare 1971, cited from; Lears 1985, 568).

Dominant in the field of organ donation are groups which assume that regulative frameworks lead to a well-informed public, thus leading to willing donors who ultimately support donations in practice, and finally increases organ donation rates (see further Hansen and Beier 2021; Hansen, Pfaller, and Schicktanz 2021). As we will show, such presumptions carry the risk of dominating the discourse, hence marginalizing certain aspects of transplantation medicine. Consequently, important aspects of transplantation medicine, like communicating the death to the family and taking care of their situation, are superimposed by metaphorically loaded discussions, which depict organ donation as the ‘gift of life,’ ‘charity,’ or even insinuate possible donors responsible for the death of organ recipients (for a critique see Łuków 2019).

Our analysis is based on a cooperation of an ethical and a sociological research project, which primarily studied critics, skeptics, and undecided persons in the context of organ donation. It was precisely those groups that have for decades been a blind spot of academic and political inquiry because it was anticipated that more information (in terms of fact and epistemic beliefs) on transplantation medicine would help them overcome their insecurities. However, the topics relevant for their decision-making lie beyond epistemic issues only. Thus, our project was the first to systematically analyze issues of trust, bodily integrity, and discomfort among critical or reluctant persons in both daily life and public/political discourse. In this paper, we will focus on a particular sub-question within this interdisciplinary inquiry: Do epistemic and moral insecurities with regard to the role of the family amplify the critique and reluctance towards organ donation? And if so, what are mechanisms to encounter these insecurities?

The empirical material we collected suggests that for many people, organ donation is not a purely individual decision. Rather, it is ‘an integrated healthcare practice with enduring frictions’ (Bea 2020, 1942) embedded in the shared realities of individuals and their loved ones. This continues after brain death diagnosis in clinical encounters when the family is involved in decision-making.

Our analysis deepens previous insights into the role of relatives, which international colleagues have profoundly analyzed (Delgado et al. 2019; Rodríguez-Arias, Molina-Pérez, and Díaz-Cobacho 2020; Shaw et al. 2020). Based on their comparative analyses, we provide case studies, which give detailed insights that a lack of information about the role of the family¹ in the German organ donation system has unintended consequences for the relatives, as well as the medical staff involved. In accordance with the sociology of the family, we regard the family as one of the oldest social institutions (Ortiz, Suárez-Villa, and Expósito 2017), whereas definitions of what comprises it are always subject to change as with other social institutions (Sharma 2013). For our purpose, we rest upon the definition of family as a ‘group of individuals related to each other, living together, cooperating and acting as a social unit, based on kinship, degree of consanguinity, marriage or adoption’ (Ortiz, Suárez-Villa, and Expósito 2017, 307).

2. Background

In the past, several attempts have been made to change the German law (first enacted in 1996) towards opt-out. In 2019, this political and ethical debate was prominently represented by the Minister of Health. Like in the past, the opt-out policy was broadly discussed in society and academia, across churches, parties, and patient groups. Its proponents and opponents also belonged to all political parties.² One major reason for ongoing political and legal debates is Germany’s relatively low posthumous organ donation rate. Most opt-out countries have higher organ donation rates than opt-in countries. However, there is no evidence that legal changes provide causal explanations for the differences in donation rates (Molina-Pérez et al. 2019). For instance, there is a rich literature (Sharp 2006; Fox and Swazey 1992) that demonstrates the relevance of anthropological, emotional, and cultural factors, which influence the moral attitudes towards transplantation medicine (Randhawa 2012; Schicktanz and Wöhlke 2017). Besides these factors, the role of the family is also relevant for donation rates (Costa-Font, Rudisill, and Salcher-Konrad 2020).

With regard to the family’s role, Germany represents a consent model known as ‘Deceased’s preferences only’ (Molina-Pérez, Delgado, and Rodriguez-Arias 2021, 48). Within this regulation, the family is allowed to update the medical team about the deceased’s preferences; for instance, if no written consent (or dissent) of the potential donor is available. The family is allowed to decide if the deceased has transferred this right to the relatives (or to another person). That way, the family has the role of a ‘surrogate’ (Delgado et al. 2019, e115) in decision-making. Being an opt-in country, in cases where the preferences of the deceased are not known and no surrogates are available to decide, organ donation cannot be conducted (Ungerer et al. 2018).

When we look into the practical discussions in Germany, however, we see a different situation. For instance, Blaes and Mauer (2004, 274, our translation) recommend ‘to guide the relatives towards a stable decision in the spirit of the deceased.’ When ‘requesting organ donation,’ ‘it should be clearly formulated that the decision of the deceased or his/her family – independent of its outcome – will be accepted’ (our translation). When Schaub et al. (2013) published a retrospective analysis of the family’s consultations in the context of donation, they argued that ‘a transparent presentation of the relevant medical steps during the phase of initiated actions to determine brain death creates confidence and opens a larger time window for the relatives for a stable decision’ (ibid., 2189, our translation) and claim that ‘discussions with relatives need to be open and without moral pressure. Every decision of the relatives has to be respected without judgment’ (ibid., 2193, our translation). Ungerer et al. (2018, 441) describe the German situation as follows: ‘The decision for or against a donation is mostly based on the presumed preferences of the deceased, which is estimated by the relatives.’ Although all three of these descriptions are surely in line with the legal policy, a closer look reveals a space of action, influence and negotiation for the actors involved – which means doctors, authorities, and the relatives themselves. This is further supported by the comment that the family should know that the donation process could be stopped at any time at their wish (Ungerer et al. 2018). These statements indicate a gap between policy (which focusses on the autonomous individual donor) and practice (which takes into account the decision for or against organ donation as a relational process between the family and the doctors) – a gap which is usually bridged through communication processes between the medical team and the relatives.

As the international literature shows, such communication processes are an important factor when it comes to barriers and challenges of organ donation (Ralph et al. 2014; Jawoniyi et al. 2017). An open debate about the difficulties or even traumatization of relatives started several decades ago (Kesselring, Kainz, and Kiss 2007; Sque, Long, and Payne 2005), demonstrating that the family indeed has long-term memories about the donation process and that meeting their emotional and psychological needs is a relevant factor for successful donations.

For Germany, Kalitzkus (2009) analyzed based on observations and interviews that families feel extremely pressured due to time restrictions and the complexity of the situation. More stress was induced through the need to cope with the death of a beloved one while at the same time being asked about organ donation in a situation of shock. Kalitzkus described that the families’ reactions – from spontaneous consent to complete revulsion – are profoundly related to the communication practices of the medical staff.

Recent reviews strongly emphasize psychological aspects with regard to the bereavement (or even traumatization) of families and their need for support even after the donation. As Chandler et al. (2017, S1) concluded: ‘[T]he literature generally supports the intuitive expectations that compassionate and respectful care for the deceased and family, listening for and addressing family concerns, and an attitude to donation that is positive (but not solely procurement-focused) and is best for both consent rates and family well-being.’ Within their scoping review, the authors also reflect on balancing the duty of respecting the donor’s autonomy against the duty of taking care for the well-being of donor families. When reviewing studies between 1968 and 2017, Dicks et al. (2017, 1) came to a similar conclusion when reflecting on the role of compassionate medical staff in donation situations. Health care professionals “can guide families and create opportunities for meaningful participation, building resilience and developing bereavement-related skills that could assist them in the months that follow.“ Against this background, it can be stated that the role of the family in organ donation can hardly be underestimated, although the discourse on organ donation mainly focuses on potential donors.³

However, recent ethical analyses recognize the moral pitfalls evolving from this situation. Of particular relevance is the international discussion about ‘family overrule’ (Shaw et al. 2020, 179). As these colleagues analyze, ‘[a]round 10% of potential donations from registered donors do not go ahead’ (ibid.) because families ‘refuse to accept the decision to donate and seem to prevent donation.’ The case may also be the other way around, in that a person refused to be a donor and the family overrules this decision; for instance, by bringing solid evidence for a change in attitude of their relative (Ungerer et al. 2018). There is further evidence that cases of family overrule also happen in Germany: In 2019, there were 3,023 contacts in clinics with regard to organ donation (2018: 2.811, 2017: 2.232). Clinics contacted the Organ Transplantation Foundation (DSO) and asked for support or information (Deutsche Stiftung Organtransplantation 2020) in those cases. From these 3,023 contacts, 28 cases of organ donation could not be procured because ‘a communication with the relatives was not reasonable’ (ibid., 60, our translation); and in 579 cases, there was ‘no consent in a preliminary stage of organ donation’ (ibid., again our translation). Within these data, we find no deeper analysis or comments if the 579 cases relate to the individual consent of the donor or the family’s role in decision making within these cases. However, the latter seems more likely as it is stated that reasons such as ‘the missing consent from relatives in a preliminary stage’ (ibid., 56, our translation) led to a refusal of donation. Combining both statements from a perspective of family refusal, we assume that there is a huge spectrum of communication between doctors and relatives that can be classified as request for organ donation and also as rejection on the relatives’ side to overrule the decision of the deceased.⁴

3. Material and Method

Our study uses qualitative social research methods (Flick 2018) to gain empirically grounded insights to understand lay and experts’ perspectives with regard to the role of the family.⁵ The collection and evaluation of our empirical data followed Grounded Theory Methodology (GTM) (Glaser and Strauss [1967] 2008). The premise of theoretical sampling according to GTM is not to determine the selection of data material a priori, but to choose appropriate data sources in light of theoretical problems to be solved (Draucker et al. 2007). The empirical data is simultaneously collected and analyzed. The research process thus goes back and forth between data collection and analysis while gradually further material is gathered and consulted. This iterative process is lengthy, but through perpetual comparison and the identification of similarities and differences, it becomes possible to identify the social structures behind the empirical material obtained from individuals and to embed them in larger paradigms of the social world (Charmaz and Belgrave 2012). To shed light on general aspects of a phenomenon, cases should be included that are as heterogeneous as possible (Glaser and Strauss [1967] 2008). The goal is to achieve theoretical saturation, which means that further material does not provide new insights into a phenomenon.

For our study, 17 individual semi-structured guided interviews were conducted all over Germany between 2014 and 2019 (see Table 1).⁶ Within these interviews, attitudes towards organ donation covered a spectrum from undecided, skeptical or reluctant persons up to active critics. They document their unease by not wanting to make a decision or by ticking a ‘no’ on the organ donor card. ‘Guided’ interviews, which follow a prestructured questionnaire⁷ (Warren 2002), guarantee the comparability of the data while allowing for openness and flexibility via an open narrative-generating introductory question, which was: ‘How did you get in touch with the topic of organ donation?’ As narratives, such interviews allow for in-depth interpretations of personal and social perceptions of organ donation. After written consent by the interviewees, the interviews were recorded, then transcribed word-by-word and anonymized (names and locations have been changed for publication).

Table 1. Overview of empirical data on organ donation in Germany: interviews

Interview No.	Characteristics
1 (f, 40)	person looking for information and support to decide on organ donation
2 (m, 53)	former nurse, activist and brain death critic
3 (f, 59)	former nurse and brain death critic
4 (f, 34)	undecided, bad conscience due to lack of decision
5 (2f)	expert interview, physician and journalist
6 (f, 43)	affected person who consented to sibling’s organ donation
7 (m, 57)	doctor critical of organ donation
8 (f, 23)	considers organ donation against the background of her religion
9 (f)	expert interview, press coordinator of the German Foundation of Organ Donation
10 (m)	expert interview, board member of the German Foundation of Organ Donation
11 (f)	expert interview, former head of the Federal Centre for Health Education
12 (f)	expert interview, current head of the Federal Centre for Health Education
13 (f, 56)	interview focused on organ donor card
14 (m, 25)	interview focused on organ donor car
15 (f)	Expert interview, head of marketing, German bone marrow foundation
16 (m, 53)	doctor and brain death critic
17 (f, 65; m, 42)	active critics – relatives

We analyzed the empirical data through computer-assisted coding, using Atlas.ti® software (Friese 2016) in weekly interpretation sessions. So-called codes, keywords, short descriptions and interpretations of the text were tagged to it: ‘[C]oding is the pivotal link between collecting data and developing an emergent theory to explain these data’ (Charmaz 1996, 37). The aim of GTM is to eventually arrive at concepts of higher analytical order (categories) and to analyze relations among categories, i.e., to gain a theoretical statement about the relation of hypotheses and categories (Charmaz and Belgrave 2007).

In the coding process, it became apparent that relatives play an important role in the decision-making process. The inductive analysis of the interview data led to a main category of ‘insecurity regarding the role of the family,’ including two subcategories: ‘information deficit’ and ‘lack of transparency’. In the further course of data collection, therefore, a targeted search was made for cases that provided deeper insights about the role of the family in public and expert discourses.

Hence, we additionally conducted extensive ethnographic research in 2018 and 2019. We approached twelve events throughout Germany (see Table 2) with the method of participatory observation that gains its knowledge through an open mode of observation ‘from within a field’ (Brewer 2000). In addition to ethical and political debates, we were able to investigate public events such as fairs and discussion events.⁸ Events organized by active critics’ associations were also observed. Thus, we aimed at analyzing ‘natural’ settings (ibid.). The aim was not to look for specific actions and patterns, but to grasp the situation in its entirety as openly as possible. Therefore, we acted as ordinary participants of events. Only when we were addressed directly did we introduce ourselves as researchers. The combination of both data sets (interview data and ethnographic exploration) allows for a comprehensive picture of the discourse on organ donation in Germany concerning the role of the family.

Table 2. Overview of empirical data on organ donation in Germany: participant observations

Location in Germany	Characteristics
Small city, North-West	event of critics, information and gathering for new members, critique of brain death criterion
Middle-sized city, North-East	Public fair, title: ‘life and death’
Small city, East	symposium on organ donation, regional hospital, aimed at medical staff in charge of organ transplantation
Large city, Middle	annual Congress of the German Foundation for Organ Transplantation, medical congress, transplantation experts
Very large city, North-East	conference of the German Ethics Council on ‘opt out policy’
Large city, Western	public discussion at University Hospital, promotion of organ donation, public information
Middle-sized city, Western	Medical student meeting, promotion of organ donation
Middle-sized city, Northern	annual German ‘Organ Donation Day’, public information

The study presented here takes a hypothesis-generating, not hypothesis-testing, approach. Moreover, it only depicts a sub-section of the field and does not draw on large samples. It is limited by its special focus on Germany. The study cannot be regarded as a comparative cultural study of the phenomenon of organ donation. The following tables give an overview of our empirical data conducted between 2014 and 2019.

4. Results: The Neglected Role of the Family in the German Transplantation System

Our empirical investigation shows that an information deficit about the role of the family poses a main source of uncertainty within the transplantation system. Among our 17 interviews and field observations, it was often mentioned and assumed that the family does not play any role in decision-making. Our sample also includes people who know other families who have had experiences with organ donation, such as Mrs. Müller, who anticipated the difficult process of dialysis and kidney transplantation of an acquaintance. She anticipates their friends’ suffering and recovery through transplantation. Nevertheless, her ambivalence and reluctance towards organ donation remain. Her moral insecurities amplify her reluctance towards organ donation.

We also talked to medical staff that became public critics due to their experience in the clinic with organ donation, like Mr. Archer, who, as a medical student, was already involved in explantations. His later wife introduced him to families of organ donors who shared their troubling stories with him. Both experiences, in the clinic and the personal stories, have changed his attitude to the extent that he rejects organ donation and would not accept to receive organ donation himself. His perceived lack of transparency in the system serves as the main source of his critique. A frequent topic is also the brain death criterion, which is hard to grasp and deal with. The relatives find it extremely difficult to deal with the death of their family member, since their beloved is supposedly in an ‘in-between’ state. At a meeting of critics, parents like Mr. Hover, who have agreed to the donation of their children’s organs or medical personnel involved, told us how difficult it is to accept a breathing, ‘sweating, rosy person’ as dead. Here the relatives experienced a traumatic experience of multiple insecurities, which they felt were not addressed properly by the medical staff. Some interviewees also referred to the fear that relatives will not be able to say goodbye properly, i.e., that the organ donation process takes place without the consent of the family.

Moreover, ambivalence is evident in many interviews, as the interviewees do not fill out an organ donor card but show a positive attitude towards the decision about organ donation: One reason is that campaigns try to persuade the public to fill in an organ donor card in order to make the possible donation scenario easier for their relatives (Hansen et al. 2018). Interviewees stress that their insecurities are not taken seriously enough by public discourse.

From our extensive empirical material, the first two interview cases will be described in more detail.

The cases show minimum and maximum contrasts within the debate. Cases were selected that illustrate very different levels of personal or professional affection with the topic of organ donation. Nevertheless, our analysis shows that both relatives of organ donors, undecided persons who hypothetically think about organ donation, as well as the medical actors, state a blatant information deficit of the role of relatives in the discourse on organ donation in Germany.

Those contrasting cases exemplify the complex and often ambivalent positions associated with the role of the family in the organ donation process, which was evident in our sample. Whereas the official discourse puts emphasis on the individual decision for organ donation, our empirical investigation shows that the family and relatives play a crucial role in the process. On the one hand, the focus of the analysis lies on the exploration of the role of family members in the decision-making process. On the other hand, more specifically, these cases point to the fact that a lack of detailed information leads to uncertainty for all actors involved which in turn oftentimes hinders an informed decision.

4.1. Case 1: Olivia/Ellie

4.1.1. Case Summary

As first paradigmatic case from our diverse and heterogeneous sample, we chose Olivia Weber because of the multifold demands that the process of organ donation places on her and her relatives. The case occurred in 2003 and illustrates the importance and consequences of detailed information on organ donation for the potential donors as well as their relatives.

Olivia is 43 years old, married and has one child. Since her sister Ellie had been suffering from a benign brain tumor for years, the family was aware of the topic of organ donation. During her lifetime, however, Ellie was convinced that as a cancer patient, she could not donate organs. When, after a long medical history (including three brain surgeries), Ellie was finally found unconscious in bed by her boyfriend, she was resuscitated and transferred to the intensive care unit of a hospital. In this situation, Olivia and her mother had to decide on Ellie’s behalf, since Ellie did not hold a donor card and had not expressed her preferences before. Her relatives approved of Ellie wanting to be an organ donor. This decision was troublesome for them. Moreover, they also felt left alone and lacked emotional support during the decision-making process, which they ascribe to a pressing time schedule in the medical procedure. The family felt that the medical staff only focused on the medical aspects and did not take seriously enough the mourning of the bereaved, which was very disconcerting for the family. Olivia is thus left with mixed-feelings about her decision to consent to her sister’s organ donation.

4.1.2. Being an Eligible Donor: Consequences of Information Deficits

Even though Ellie had a positive attitude towards organ donation, she thought that as a cancer patient, she would not be eligible to be an organ donor herself:

Olivia

: I remember a situation where she had an organ donor card and she put it into some book and said: “Well, that’s beyond question for me, because all these drugs have damaged my body.” She had bad liver values and everything was really in a bad condition because of the three surgeries and all the drugs she had to take.

Ellie’s certainty about not being an eligible donor is striking. As a cancer patient, she thinks she cannot donate ‘because all these drugs have damaged’ her body. Moreover, after consenting to Ellie’s organ removal, Olivia describes the process as beginning too fast for her and her mother, feeling a lack of support by the medical staff:

Olivia

: At that point when we had decided, everything went very quickly. We were told: “Yes, it will take a few more days” until the organ removal was done. And then the date was set earlier and earlier. Well, you have to say that this was in 2003, and it was the week before Easter. (…) But somehow we had the feeling that we were a nuisance to them. They wanted that, how shall I say it – they explained everything to us, but somehow it was as if they wanted to get rid of us as quickly as possible. And I think that when you say as a doctor: “Well, it takes two or three days”, and then it’s the next day. (…). And um, I thought it was just bad for us that we didn’t have the opportunity to say goodbye. Suddenly there was another man in the room with us. We were no longer alone with her. I would have liked that.

Olivia and her mother felt taken by surprise in the situation. They were not cared for with the intensity they would have liked. The feeling of being ‘a nuisance’ to the doctors and not being able to say goodbye sufficiently impeded their mourning process. In the further course of the interview, however, she expressed that it feels as if her ‘sister is still there, but that is not bad.’ Even though she experienced the process of her sister’s organ donation with mixed-feelings, she expresses a positive attitude towards organ donation and shows understanding for the medical staff. Nevertheless, the consequences of her experience lead to her own decisiveness:

Olivia

: And I don’t have an organ donor card for myself, because I just think that if something should happen to me, my husband has to decide. But I found it a bit careless how we were treated. So, it didn’t go very well, we had this feeling, after we consented relatively quickly, it went very fast. And if we had waited another two days … then maybe we would have had more time (to say goodbye).

Olivia cannot or does not want to make her own decision regarding organ donation. Her ambivalence remains to such an extent that she sees the solution in passing the decision on to her husband. She prefers her husband to make the decision for her, rather than making her own decision. She assumes that he is capable of making decisions both for her sake and for his own well-being. Immediately after she talks about her leaving the decision to her husband, she again expresses her dissatisfaction with the lack of care, which she and her mother experienced in the hospital. Her very difficult experience with her sister’s death is directly reconciled with her own decision uncertainty. Instead of deducing from her sister’s experience the wish to document her own decision, she prefers to remain without an organ donor card.

Olivia Weber’s case indicates that an information deficit about the eligibility as donor can lead to troubling consequences for the relatives. This does not only concern people who are seriously ill (like cancer patients) but more generally also older people who mistakenly assume they cannot donate organs (Schweda and Wöhlke 2021). In this case, neither the affected person nor the relatives knew that cancer patients can still donate. Moreover, they were not aware of their role in the decision-making process, since Ellie did not decide herself. Had Ellie been aware of her options, she could have had the chance to make the decision for or against organ donation herself. Due to her lack of information concerning her eligibility as a cancer patient, the family was finally burdened with the decision.

This case shows that the system lacks the possibility to provide these patients with the information they need to make their own decision. Thus, a failure of previous policies and practices of information transfer is indicated. Moreover, Olivia’s case indicates that the changes in the law with focus on more information were a necessary step forward.

4.2. Case 2: Maria

4.2.1. Case Summary

Our second paradigmatic case is that of Maria Fischer, 34 years old, married, one child. Even though Maria has already extensively discussed the topic of organ donation with her husband, she is looking for more information, which she describes as her motivation to participate in the interview. Although she has a positive attitude towards organ donation in general, she does not hold a donor card. As described elsewhere (Adloff and Pfaller 2017), her ambivalent position makes her feel guilty, as she claims to be a ‘committed and social person’ and wants to help others and save lives. For Maria, organ donation is not merely subject to an individual reflection on her body and death, but rather her husband’s emotions are central to her reflections. At the heart of her considerations lies the fact that her husband has to live with her decision for or against organ donation.

4.2.2. Ambivalence and the (Im)Possibility to Consent

When expressing her guilt about not holding a donor card, Maria feels relieved that her husband shares the same feelings of ambivalence and lack of information:

Maria

: Actually, I almost feel ashamed of it sometimes, it’s just a guilty conscience, almost a little ashamed that I don’t have [a donor card]. (…) But somehow I felt a little relieved that my husband said he doesn’t have one for the same reasons, because we know too little about it.

I

: You said you almost felt a little relieved. Could you describe it again?

Maria

: Well, because my husband is also very committed and thinks it’s stupid when too few people are involved in such important things. And relieved, uh, that he did not do it. Then I almost didn’t feel bad, maybe not so bad, because he didn’t do it either. But maybe that doesn’t make much sense now, but I almost thought, okay, then I’m not the only bad person who actually has good intentions in life, but who somehow decides against something so important.

The ideal of consenting to organ donation corresponds to her self-description as ‘a committed person.’ She feels ‘ashamed’ and ‘as a bad person’ since she cannot comply with the moral demands of donating her organs, which she holds as a virtue of ‘having good intentions in life.’ Not being able to correspond to the desired behavior leads to self-image distortion. Nevertheless, her felt ambivalence about organ donation is resolved by her husband sharing the same feelings. With him sharing similar perceptions, she feels like ‘she is not the only bad person.’

Moreover, she is particularly interested in the ways in which relatives, and especially her husband, are involved in the decision-making process and expresses her lack of information on the topic. During the interview, Maria describes her strong uncertainty about her husband’s role:

Maria

: I do not know to what extent the relatives will be asked at all. That is something I really do not know. For example, if my husband wants to keep my eyes (…) inside. And until I don’t know the details, I can’t make such a blatant decision.

Ms. Fischer lacks central information on the organ donation process. On the one hand, she is insecure about the extent to which ‘the relatives will be asked at all’. She is uncertain whether her decision is binding or subject to consent by the relatives. On the other hand, it is important for her to be informed about the concrete process, especially which rights her husband has. She concludes by stating that those gaps of knowledge make an informed decision impossible for her.

In this case, the decision to donate an organ is more abstract and subject to great uncertainty and ambivalence. Maria’s story shows how a) the decision-making process must be based on sufficient information, otherwise, individuals will be unsettled and, as a result, not be able to decide; b) organ donation is often made not as an autonomous, individual decision but as a joint consideration of the nuclear family. Maria’s concept of the body, as well as the values of her husband, thus complicate the decision.

Maria’s ambivalence is directed against fundamental basics of organ transplantation, a purely biomedical perspective of the body which anticipates that one does not ‘need’ one’s organs after death. Schicktanz and Wöhlke (2017) reconstruct basic body anthropological patterns that exist as implicit – i.e., inaccessible in public discourse – cultural interpretations in the ‘hidden’ realm of the unspeakable. This is what triggers Maria’s ambivalence: she is convinced that more details might facilitate her decision, but still, her own concept of the body ‘blocks’ her decisiveness. According to Schicktanz and Wöhlke the public narrative of organ donation as morally correct, altruistic behavior and ‘the constant appeal of the social obligation to donate […], cover […] further motives and contexts of meaning that those affected connect with organ donation’ (ibid., 77, our translation). For Maria, the careful consideration to be an organ donor does not merely constitute an individual decision. Her husband’s attitude and consent are equally important. The fact that he could be willing to ‘keep her eyes’, respectively his ideas of bodily integrity and images of death, are equally fundamental to her decision. In Maria’s case, organ donation is a negotiation process; the decision process involves the family’s beliefs. The existing value systems are negotiated in relation to the family. Organ donation is depicted as a joint decision of the core-family.

Furthermore, the coping of the family members is at the center of the decision for or against organ donation. Maria’s case shows firstly how an individual decision cannot be reached due to missing or incorrect information, finally burdening the family with the decision-making process in case of her death. Secondly, this case demonstrates that the decision-making process not only includes considerations about what happens to one’s own body after death, but also how the relatives can cope with the imagination of their relatives being an organ donor.

4.3. Ethnographic Exploration: Opening Pandora’s Box

In the course of the preparation of the new organ donation policy, many events were held in Germany to foster a public discussion and ensure support of the population. We have observed events ranging from active critics to congresses aimed exclusively at transplant physicians. While medical events in clinics and congresses mainly focused on the role of recipients, the decreasing number of donors and other challenges of transplantation medicine, events of critics focused on brain death and lack of education in the public. In this paper, especially those events with the intention to create a dialogue between experts and the public are of interest. Here, physicians encounter a broader public. At these events, discrepancies between groups became particularly apparent in situations where (a) medical actors talked about their perceptions of the practice of organ donation in the clinic and their perception of the importance of the family in the decision-making process and (b) relatives of organ donors talked about their personal experiences.

We observed a panel discussion, which was part of a series of lectures with the aim of generating more public attention to the topic of organ donation. The dialogue event was organized by the interdisciplinary center for palliative medicine, the Protestant and Catholic clinical pastoral care and the clinical ethics committee of a German university hospital. The event was directed towards medical professionals as well as laypeople and was located at the cafeteria building of a university hospital with about 80 participants. There were few young people in the audience. The event was moderated and introduced by a radio and TV journalist.

Following three relatively short keynote speeches, there was a lively discussion between the speakers and the audience. The schedule was exceeded by 45 minutes. The following field notes focus on the panel discussion at the end of the event. The panel includes four physicians (transplant officer, neurosurgeon, general practitioner, ophthalmologist) and the moderator. The course of the discussion was surprising. Even though it was intended as an information event on declining donor numbers, the panelists were very controversial about the role of relatives in the organ donation process. There seemed to be a great need for discussion on part of the physicians. A heated discussion arose about the fact that in practice the relatives always make the final decision.

4.3.1. Lack of Transparency

The moderator opens the discussion by asking the panel about their assessment of public information levels on organ donation in general and the practice of brain death diagnosis in particular – which is the condition of organ donation in the clinic. While one panel participant rejected the question as an ‘opening of Pandora’s box’, one physician remarked his strong concern about a public information deficit and referred to the role of relatives in the process:

Few people with an organ donor card really know what’s happening in the donation process. I think that’s true of a lot of what happens in medicine. Everyone has to live with the decision. Also the relatives must know and understand exactly what is happening. (Frank Rosin, Doctor, University Hospital, panel discussion)

As Frank Rosin remarked, the organ donation discourse includes not only donors and recipients but the families as well. Not only should the relatives be informed, they also have to be able to ‘live with the decision.’ Hence, their role is of great importance to him, stressing that also they ‘must know and understand exactly what is happening.’ Thus, the need for individual information and clarification about the process of organ donation is extended to the family. The statement can be understood as a desire to remove taboos. It was important for the doctors to point out that more education about the role of the family is needed. As described above, however, the topic of the event was not the family, but possible strategies to avoid declining donation numbers. It is very revealing that also medical professionals claim to take seriously the role of the family in the medical practice of organ donation.

Moreover, the moderator directs the debate to the ‘opt-out solution’ referring to its mostly ‘negative social connotation’. During the debate, the medical actors point out that the legal situation would not result in changes to the everyday practice of organ donation:

The opt-out solution has a symbolic effect and hardly any real impact. So why keep the debate so high? The main thing is to make transplantation itself a public issue. (Tom Vogel, Doctor, University Hospital, panel discussion)

Tom Vogel’s description of the policy changes having a ‘symbolic’ rather than ‘a real impact,’ highly conflicts with the political debate, which saw the change in law as the expedient solution to decreasing donor rates in Germany. The German policy discussion dominated the public discourse before the final vote. In Tom Vogel’s eyes, the debate of the opt-out policy obscured informed discussion about the ‘’transplantation itself” as ‘a public issue’. Moreover, there exists a strong gap between the policy and medical discourse concerning the role of the relatives. As one panelist stated:

Wouldn’t the relatives also have to decide in case of the ‘opt-out’ model? The system makes no difference – the relatives have the buck. (Herald Flinn, Doctor, University Hospital, panel discussion)

As becomes clear from Herald Flinn’s remarks, medical actors are aware of the tensions the official guidelines create for the family and relatives. In practice, the relatives make the final decision about organ donation. The physicians also point to existing difficulties of the system, which are connected with the tabooing of the role of relatives in public discourse. Without a public debate, the relatives will continue to ‘have the buck,’ as mentioned here. The experts seem to agree. In practice, everyone knows about the problem of a lack of education about the role of the family, but politics has not yet reacted accordingly. Here, there are clear discrepancies between the shared experiences of practice and the publicly discussed demands that are not directed at families but at individual donors. Independent from political and juridical changes in the German transplantation law, the practice stays the same. Furthermore, when asked by the audience about contradicting wills of donors and relatives at the end of the discussion, one physician answered:

‘That happens a lot. We don’t want the yellow press here. We’ll renounce for the good of the whole.’ (Douglas Robertson, University Hospital, panel discussion)

Not only does the family play a central role in the decision-making process, but, in practice, the family even has a right to veto. These dimensions of medical practice are not reflected in the official discourse or even neglected, e.g., in the parliament proposal in favor of the ‘opt-out’ model. The fear of the tabloid press, as elaborated by Douglas Robertson, also points to strong uncertainties and taboos which doctors are confronted with in their daily work. After the so-called scandals in Germany, medical actors are exposed to a very critical public (see the background of this paper). This is reflected in the fear of the press alluded to here. Since, above all, the distrust of the population is cited as the main reason for the declining donor numbers by official representatives, the credo prevails that the system cannot afford any further doubt or distrust. The results complement our interview cases by pointing to a gap between policy and practice, concerning the right to veto of the family. Moreover, the relatives play a much greater role in organ donation than is publicly negotiated. They are a crucial point to contribute to the welfare of the whole organ donation system.

4.4. Ethnographic Exploration: External Support for Donor Families

The following case illustrates the marginalized presence of relatives of organ donors at public events. The largest educational and information event in Germany, the annual Day for Organ Donation, addresses above all the needs of the recipients and appeals to the moral obligation of the individual to donate. As we will illustrate in the following, based on an association of relatives, the family is oftentimes left alone with the grieving process. Moreover, the consent of the relatives can also have negative social consequences.

4.4.1. Setting Description

We conducted an observation at the Day for Organ Donation in 2019. Since 1983, the dialogue event has been held annually in Germany. On this daym the German Foundation for Organ Transplantation, the Federal Centre for Health Education, the German Transplantation Society, among others, and self-help groups of organ recipients, provide information about organ donation and transplantation to draw attention to the topic of organ donation in the general public.

The event takes place in the pedestrian zone of a medium-sized German city. The majority of the audience is at least 50 years old. Like the event at the university hospital, the discussion is moderated by a prominent figure from public radio and television. The first part of the event takes place on stage. The mayor, the minister of health and responsible persons of the largest German health institutions draw attention to the relevance of the topic. Organ recipients, their suffering and success stories are addressed on stage. The presentations and discussions on stage mainly emphasizes organ recipients and declining donor rates. In the second part, the audience can browse around the inner city and grasp information from various information tents. The tents mainly focus on the medical and political background of organ donation. Only one stand depicts the role of family and relatives of organ donors. The following field notes depict a conversation with the woman running the information tent for relatives.

4.4.2. Addressing the Needs of Relatives

The information tent of the ‘Network of Donor Families’ is the only one of its kind at the information day among the many medical information stands. The woman in charge of the stand, Helen Farmer, tells us that the network was only founded in 2017 and is the only nationwide organization of its kind. In her words, the aim of their organization is ‘to help the relatives to cope well with the situation in the long term’ (Ms. Farmer, Network Donor Families).

The ‘Network Donor Families,’ Helen Farmer tells us, has a positive stance towards organ donation and acts as a connecting link between organ recipients and donor families while also providing the relatives with assistance in processing the situation. The network is available on request to all those who are faced with a decision on organ donation. The relatives felt the need for further assistance and founded the organization to ‘raise the issue of a comprehensive, dignified and professional approach to relatives before, during and after organ donation and promote the recognition of organ donors and their families.’

During the course of our conversation, Helen Farmer also talks about her daughter, whose organ donation she consented to after a serious car accident. Although her daughter had made a clear decision to donate an organ and documented her will on an organ donor card, the final decision always rests with the relatives, she tells us. Although the death of her own daughter was the worst thing imaginable, knowing that the transplantation could save the lives of four people helped her mourning process. However, some relatives and friends did not take her consent to her daughter’s organ donation very well at all. Some accused her of having ‘murdered her daughter and exploited her organs’. This was a very difficult time, and she is no longer in contact with some former acquaintances, but her involvement in the network helps her cope with the terrible events. From her experience, many relatives of donors would suppress the topic and isolate themselves anonymously. The long-term psychological burden for the relatives of donors is a topic that is still too little considered and they meet with a lot of need for discussion and encouragement with their action organized within the framework of the network of donor families.

As the example of a self-help network for relatives makes clear, in the current transplantation system in Germany, families must create spaces for themselves to make their concerns heard, which would otherwise go unnoticed.

5. Discussion: Contrasting the Hegemonic Discourse

Our exploration draws a complex picture of the family in the German transplantation system since 2003 (Oliva Weber’s case). A special focus is placed on contested aspects attached to the role of the family, which are rarely discussed in the official policy discourse, although it has gained increasing attention in experts’ discussions (see background).

According to Delgado et al. (2019, e114), the family may have four different roles in OD policies: ‘no role (L0)’, act as a mere ‘witness’, without any capacity to make a decision (L1), act as a ‘surrogate’ decision-maker when the deceased had not expressed any preference (L2), or have ‘full decisional authority’ (L3). Our empirical investigation of the German transplantation system shed light on some important blind spots. We see that although legally, the family in Germany has a L2-role (ibid.), in practice it rather seems to be the L3. Considering the diverse experiences of actors in the field, it becomes apparent that the transplantation process places far-reaching demands on the actors, besides the question of consent or rejection. In concrete situations, especially when the family surprisingly is in the L3-role, organ donation never ends with the removal of the organs. It is an experience that leaves a lasting mark on the life course of the relatives. However, such suffering of the bereaved (see background) is rarely addressed publicly. This is visible in our fieldwork of official events, like the Day for Organ Donation, where mostly organ recipients are on the frontline of interest. The relatives that are organized in the more critical associations reported that they felt abandoned after having agreed to the organ donation of their sibling. Our results suggest that the family’s burden of decision-making could decrease when discussed openly. Even if this experience will always be emotionally elusive, the relatives would be better prepared (Gross et al. 2001).

Still, collective strategies in this field to fill the gap between policy and practice, which would lead to relief for potential donors, medical staff and relatives alike, are missing. This is important, because at least in our sample, this process is no pure individual and rational decision. It is rather the relatives’ anthropological, cultural and emotional attitudes which influence (or even guide) the decision. This aligns with a sociology of the body, which anticipates that the individual body is never alone in the world, but is always integrated into social relations (Turner 2012). This conflicts with a biomedical perspective, which regards the body as individual entity. In everyday culture, however, the body also functions as an expression of social bonds and relationships (ibid.). Anxieties and vulnerabilities are an important part of these bonds (Chan 2019). From our perspective, sociological and ethical questions cannot be separated but are intertwined and closely related when it comes to such sensitive topics as organ donation. Furthermore, concerning epistemic questions in contested fields of medicine and technology, it becomes evident that ethics and sociology engage with each other to understand, interpret and evaluate such practices; but also to reflect upon the epistemic foundations of qualitative methodologies (Fuller 2000; Haimes 2002).

5.1. Epistemic Opacity and Its Ethical Relevance

Our analysis shows a plurality of the family’s role in the German system, which reveals an inner problem of the OD system as it creates a certain epistemic opacity⁹ (with regard to the role of the family). Interestingly enough, this happens in a field, which is highly regulated otherwise:

Vagueness about the validity of the patient’s consent leads to much of the other vagueness surrounding donation; all of the attempts to reduce family objection rates involve some degree of guesswork about what a patient would have wanted. In a sense the vague consent is sufficient because the patient is dead by the time we do what they’re consenting to. But the family is still there and they are aware of the vagueness, which leads to distress and confusion. (Shaw 2017, 431)

In our data, this spectrum of epistemic opacity starts with people who do not have access to necessary information to make a decision. It also includes people who have a vague idea about the family’s role but yet no solid knowledge about it, and ends with people who are well informed but do not have expert knowledge about the gap between policy and practice.

Even for an expert, the role of the family (see 2) seems vague when the official DSO data and practical recommendations are considered. It offers a huge space of action. This is not inherently problematic as laypeople can have good reasons to trust experts’ judgements (Leefmann and Lesle 2018). However, in the field of organ donation, the knowledge of groups with regard to the family’s role do not only differ extremely – donors, families, and also potential recipients might have disadvantages from this opacity. Such disadvantages include cases in which the donor’s preferences might be harmed, the family might be overwhelmed with this decision and potential recipients might be harmed due to fewer organs available (Shaw 2017). In terms of donors’ autonomy, this seems highly problematic: if the family has the possibility for veto in practice, the donor should at least be informed about it.

We also see that knowledge is central to the decision for or against organ donation. Opacity amplifies moral ambivalence, as we have shown in the case of Ms. Fischer, hence leading to a postponement of the decision. In addition, a lack of detailed information leads to the burden on relatives, as became clear in the case of Ms. Weber. Consequently, doctors are confronted with relatives who have to make difficult decisions in times of high emotional stress. Moreover, they lack sufficient information about their scope of action. However, and most importantly, there is hardly enough space in public discourse and clinical practice to address this emotional stress and find coping strategies. As long as we stick to the ‘information deficit paradigm’ of transplantation medicine (Hansen et al. 2018), in which anxieties, critique and burdens are only balanced with more facts about organ donation, such strategies can rarely be found. What could be first steps to address such sensitive, complex issues? From an ethics of care perspective, Chan (2019) argues, we should start with listening and understanding the multiple anxieties in the field of transplantation medicine, which might also include reasons for refusal of transplantation and care of relatives after a transplantation occurred: ‘Sensitivity to the family reactions, compassionate and emphatic understanding is indispensable’ (ibid: 299).

While it is health care professionals who are/will be in such a caring role, it is a general challenge for the medical system and for deliberative discourses to open up a space where a care ethics approach can evolve, for instance, in taking up anxieties, but also hopes and distrust as topics in public events, or in local ethics committees and further research projects. Transferring such emotions into solid arguments will surely be a collective effort of multiple stakeholders, of clinicians, psychologists, ethicists, journalists, and policy makers alike. However, they also need to create a space where such emotions can first and foremost be uttered.

The necessity for such a space becomes visible through our data. It becomes clear that some of the public appeals, which mostly focus on the individual donor and the moral commitment of the individual, are neither consistent with the experiences of the medical actors nor the relatives. Some expert knowledge is consistently not discussed in public debates; however, the deeper reasons (which might be troubling situations amongst experts themselves) need to be elaborated in further projects and research, for example through anonymous expert interviews. Still, we can see that topics are not openly discussed, which creates tensions not only for the families but also for the doctors involved. Being confronted with moral conflicts themselves (families vs. donors’ decision) and being afraid of bad press, the reasons for their actions and the anthropological, cultural, and emotional factors underlying becomes comprehensible.

The statements of medical actors we observed point to strong heterogeneities and conflicting perspectives within the profession. As the physicians claim, there is a troubling lack of knowledge on organ donation in the public, especially concerning the details of the procedure. Therefore, it seems highly necessary to include the topic of family overrule in the public discourse, as well as public information material that is spread alongside campaigns (Hansen et al. 2018). It needs to be clear that although there are good moral reasons to give the individual donor’s autonomy legal priority, their decision is and needs to be balanced against the emotional burdens and preferences of the relatives.

5.2. Collective Strategies in Response to Discursive Exclusion

In the field, we find a strategy – besides silencing – to deal with the opacity by building separate groups of support and critique. In terms of Glaser and Gilbert (2004), we can speak of ‘collective epistemology,’ of beliefs and convictions that are not only held by individuals but in small collectives (such as families) and larger groups (see Beier et al. 2016). Since the decision-making competency of the relatives is not reflected in the campaigns and public knowledge, a result of neglect in official discourse are support groups and networks of relatives.

On the one hand, as depicted above, the recently founded ‘Network of Donor Families’ is met with a lot of demand and encouragement by donor families. The network has a positive stance towards and supports organ donation in general. Their claims mainly refer to the lack of institutional embeddedness of relatives in the transplantation system. On a continuum of different forms of criticism, their position can be regarded as discourse-internal form of critique (Hansen et al. 2018; Adloff and Pfaller 2017; Pfaller et al. 2018) because it does not fundamentally question the practice of organ donation. The claims stay within the realm of ‘utterable’ positions within the public and medical discourse (see Schicktanz and Wöhlke 2017).

On the other hand, there are organizations of critics such as the initiative ‘Critical Education on Organ Transplantation.’ They actively advocate against organ donation after the traumatizing experience of consenting to a sibling’s organ donation. Those relatives regret their decision and feel left alone with their mourning process (Adloff and Hilbrich 2019). In contrast to the network of donor families, their criticism resulting from their experiences is now directed against organ donation per se. Among other things, the group also questions and criticizes basic assumptions such as the brain death criterion in public events. They have professionalized their criticism of organ donation and hold their own symposia and conferences.¹⁰ Their position is not recognized in the official debates and is therefore to be understood as external to the discourse (Hansen et al. 2018; Adloff and Pfaller 2017; Pfaller et al. 2018; Adloff and Hilbrich 2019).

The exclusion of skeptical or critical arguments results from a process of demarcation between what is considered ‘utterable’ and ‘unutterable’ in a debate (Herzog 2013; Link 2008). This demarcation line, however, is determined by dominant actors since only certain speaker positions are able to be heard and thus shape the discourse. Who claims interpretive sovereignty in the discourse thus determines the legitimacy or illegitimacy of speaker positions (ibid.). In the context of the debate about organ donation, these are primarily the medical and political actors (Hansen et al. 2018; Pfaller et al. 2018; Adloff and Hilbrich 2019). Withdrawing from the discourse or even being actively excluded from it by hegemonic actors, the association and the professional appearance opens up a protected space of discourse for the active critics, where they can share their experiences and support each other’s arguments. Such a space of discourse can be seen as ‘counter public’ (Fraser 1990). On the one hand it has a critical potential, but on the other risks developing its own dynamic. This dynamic might result in circles of refusal, which tend to be one-dimensional, ignoring the positive effects and good reasons for transplantation medicine. Whereas we doubt that all critique of organ donation will (or should) ever vanish completely, we see a strong ethical and also political necessity for inclusive strategies of empathy and engagement with such counter-publics. In terms of deliberative actions (Habermas 1987), there is a tendency in fields like medicine and technology, which seems relevant for other current social phenomena as well, like Corona-critics in Germany. Groups have oftentimes experienced the fact that their criticism will be deprived of the opportunity to be heard when confronted with the hegemonic positions (see also Adloff and Hilbrich 2019). In classifying such groups as ‘uninformed’, however, we might be too quick, as other factors might influence their exclusion from the hegemonic discourse. The exclusion processes function gradually; that is, the further away from the center of the ‘utterable’, the higher the probability of being excluded from the discourse (Herzog 2013). In opening up a space where some emotions become utterable, instead of being neglected, there might be inclusive potential.¹¹

More generally, the associations of relatives of organ donors fill a void within the transplantation system, which mainly focuses on other actors (recipients, donors, hospitals, medical staff). But the point is that these groups do not only function as compensation for knowledge gaps, but also as an emotional network and moral deliberation group. Finally, such experiences of exclusion can result in a deep mistrust of the transplantation system. Nevertheless, more empirical investigation is needed to further clarify the multidimensional experiences of individuals in the organ transplantation system in Germany. Our empirical analysis suggests that such groups can be seen as a collective strategy to cope with a lack of care (see above) that they encounter in the current system, which does not address multiple anxieties, unfulfilled hopes, or traumatic experiences.

6. Conclusion

It is apparent that every decision – for or against organ donation – contains insoluble conflicts for the parties involved. Relatives, but also physicians have the feeling that they cannot ‘do it right’ because – so our argument goes – the complex role of the relatives is not sufficiently addressed. In addition, ambivalence and uneasiness have a difficult stance in public discourse, which focuses on the moral obligation of the individual to donate. Furthermore, the relatives need support to cope with the situation during and after the decision-making process. Hence, they require (a) detailed information about their own role, since in practice the final decision often lies with the family; (b) sensitivity and long-term emotional support.

Two points of the empirical investigation are most striking: First, our analysis demonstrates how important it would be to further invest into communicative and psychological skills of medical staff to address the family’s role and encounter barriers of organ donation. Finding an ethically reflected way to guide the family through the process of donation and bereavement without being too persuasive will most likely be a topic for future concern. Based on our analysis, we also recommend a new, professional role in addition to the transplant coordinator responsible for talking to families. Such a role could be fulfilled, for instance, by a specialist nurse, like in the UK system.¹² Ethicists or pastors, with special training regarding the medical aspects of transplantations, could fulfill this role as well. Secondly, we advocate for these efforts to be implemented before further legal debates in the nearer future. However, it might be necessary to debate the role of the family also in the legal context and even integrate the family veto in law or policy. Although this would have profound consequences in terms of donor’s autonomy, this would remove taboos in the context of transplantation medicine, leading to changes also in public debates and health education. Ethically, this could be legitimized from a rights-based perspective. Wilkinson (2005) argues that donors have indeed negative rights with regard to donation (when they have expressed their unwillingness to donate, this decision should not be overruled) but not necessarily positive rights to donate (in terms of being entitled to be a donor under any circumstances).

Based on our analysis, we assume that there are cases of family refusal in Germany. This particular discrepancy between policy and practice creates conflicts for all actors involved, but it remains a taboo of academic inquiry and public discourse. To draw a complete picture of organ donation, it needs to be addressed that the everyday reality of medical practice is more complex, and so are the emotional and psychological needs attached to it. The public narrative of organ donation as desirable, altruistic behavior increases this tendency. As the organ donation debate shows, the existing hegemonies and epistemic opacity in the discourse must be countered with arguments that also include anxieties, unfulfilled hopes, distrust, and anthropological concepts of the body, which are not in line with a biomedical perspective. However, if one takes the analysis of drawing boundaries in discourses seriously, it becomes clear that what is seen as a ‘rational’ and valid argument is a part of the hegemonic discourse itself. Modern medicine, with its spaces of possibility, produces ambivalences, discomfort, and problematic experiences that are difficult for individuals to articulate. Thus, supporters, skeptics, critics, experts and undecided people alike should feel invited to participate in the social process of decision-making, which in our view includes an open (not prejudged) space also for their emotional burdens and negative experiences.

Acknowledgments

We would like to thank all participants for their willingness to take part in an interview thus making this research possible. Furthermore, we would like to sincerely thank Silke Schicktanz, Frank Adloff, and two anonymous reviewers for their comments and constructive feedback. Moreover, we would like to express our thanks to Madeleine Quindeau and Leonhard Anzinger, who were very committed to the joint analysis of the empirical data; and to Larissa Pfaller, who conducted the interviews.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This research was supported by the German Research Foundation (Deutsche Forschungsgemeinschaft, DFG), project number 252341816.

Notes on contributors

Iris Hilbrich

Iris Hilbrich is a research associate at the Humanities Centre for Advanced Studies ‘Futures of Sustainability’ at the University of Hamburg. Her research focuses on biomedical research, sustainability, science and technology studies and participatory research methodologies.

Solveig Lena Hansen

Solveig Lena Hansen is a lecturer for ethics at the University of Bremen, Faculty 11 (Human and Health Sciences). Previously, she was a research associate at the University Medical Center Göttingen, where she is currently completing her habilitation. Her research topics include ethical aspects of health communication, obesity, organ transplantation, and fictional narratives.

Notes

1. Thus, we explicitly include new family models such as shared parenthood, LGBTQI-couples, etc.

2. The opt-in model can also be found in other countries, e.g., Switzerland, Australia, Denmark, or the US. However, many countries have switched to opt-out in the last years, amongst them the Netherlands, Wales, and England. Other countries, such as Spain and Austria, have operated with opt-out policies since the beginning of their transplantation systems.

3. A major point of the ethical debate is whether persuasion or nudging into consent is legitimate in a situation where the family is asked for their approval and/or to act on the behalf of the donor (in case the donor’s preferences are not known) (Rodríguez-Arias and Morgan 2016). While some have recently argued that it is morally legitimate to nudge a family into consent to organ donation (Sharif and Moorlock 2018), others have strong moral doubts (Truog 2012).

4. Still, also among possible 1.371 organ donors in Germany in 2019, there were 293 cases where the relatives did not consent to the donation after determination of brain death (Deutsche Stiftung Organtransplantation 2020, 60).

5. For an overview of different qualitative methodologies and research designs, see e.g. Creswell et al. (2007).

6. The project also conducted nine focus groups in addition to individual interviews. In this paper, we do not include them for pragmatic reasons.

7. The guideline was developed in close cooperation of all project partners and members of the research team.

8. We have observed debates of the German Ethics Council as well as political debates and public discussion events with physicians regarding the legal amendment of the German Transplantation Act. Unfortunately, however, describing the genesis of the legal debate in Germany is beyond the scope of this analysis.

9. In the following, we refer to epistemic opacity as vagueness concerning knowledge gaps about a specific phenomenon. We emphasize the connection between knowledge and decision-making competence in ethically sensitive issues. Nevertheless, we would like to point out there is a discourse on epistemic opacity referring to the reliability and trustworthiness of computer simulations (see e.g. Durán and Formanek (2018), Lehnhard (2019)).

10. See www.initiative-kao.de.

11. One could perhaps go so far as to say that the exclusions lead to a loss of rationality, that more and more irrational arguments are ventilated among the excluded, as is evident in various social settings, such as the discussion about the coronavirus.

12. https://www.odt.nhs.uk/odt-structures-and-standards/organ-donation-retrieval-and-transplantation-teams/role-of-specialist-nurse/