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Moral tales of parental living kidney donation: a parenthood moral imperative and its relevance for decision making

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Abstract

Free and informed choice is an oft-acknowledged ethical basis for living kidney donation, including parental living kidney donation. The extent to which choice is present in parental living kidney donation has, however, been questioned. Since parents can be expected to have strong emotional bonds to their children, it has been asked whether these bonds make parents unable to say no to this donation. This article combines a narrative analysis of parents’ stories of living kidney donation with a philosophical discussion of conditions for parental decision-making. Previous research has shown that parents often conclude that it is “natural” to donate. Our study shows that this naturalness needs to be understood as part of a story where parental living kidney donation is regarded as natural and as a matter of non-choice. Our study also highlights the presence of a parenthood moral imperative of always putting one’s child’s needs before one’s own. On the basis of these results, we discuss conditions for decision-making in the context of parental LKD. We argue that the presence of a parenthood moral imperative can matter with regard to the decision-making process when parents consider whether to volunteer as living kidney donors, but that it need not hamper choice. We emphasise the need for exploring relational and situational factors in order to understand parental decision-making in the context of parental LKD.

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Notes

  1. See the German Transplantation law Gesetz über die Spende, Entnahme und Ûbertragung von Organen 1997: para. 8.1, The Swedish Transplantation Act. SFS 1995: 831, Council of Europe 1996, Delmonico 2005.

  2. For further discussion of this, see Crouch and Elliot 1999 and Zeiler 2009.

  3. An open invitation, with a description of the project, was available at the kidney patient association home-site in Sweden, in the Swedish patient support journal and through the Transplantation Centre at Sahlgrenska University Hospital, Gothenburg, Sweden. If interested in participating in the project, interviewees were asked to contact the project group. The invitation stressed that we were interested in the interviewees’ experiences of considering parental live kidney donation. We had no couple interviewees with parents where neither of them had donated to the child.

  4. We chose couple-interviews with partners in families since this can increase the complexity of interviewees’ narratives and encourage more detailed stories than those generated by individual interviewees. This is the case if one interviewee’s story-telling encourages the other to tell her or his version of the event or if one person’s story-telling jogs the memory of the other and results in further spontaneous reflection. Couples can also corroborate and/or question each other’s stories. In these ways, couple-interviews can enable an exploration of the dynamics of, and expose negotiation in, partner relations and decision-making. Of course, a couple-interview may also produce an “official” simplified story and interviewees may feel less free to express their own views. We were interested both in the content of the interview and in the interplay between the parents; for this reason, couple-interviews were suitable. In one case, the interview was carried out with a father and his female partner (i.e. not the recipient’s biological mother). Both of these interviewees had considered whether to volunteer as donors. The interviewees were all born in Sweden. One mother and one father described themselves as Christians; others said they did not adhere to any institutionalized religion. The interviewees who did say yes to the invitation are, of course, those who want to tell us about their experiences.

  5. Stories with a moral or a point have a long tradition and they are told with a certain purpose; a number of different morals/points can also be identified within a narrative. See Adelswärd 1997 and Polyani 1989.

  6. Compare also other studies that show how motives such as a desire to help, increased self-esteem from doing good deeds, identification with the recipient, self-benefit from the relative's improved health, external pressure, and a feeling of moral resulted in the experience, on the part of potential living kidney donors, of donation being the only viable option (Lennerling et al. 2003).

  7. Andreas and Emma (recipient age: 26) described this as what settled their discussion of who should donate. Their doctor, they said, had told them that if both of them were equally acceptable as donors, they would prefer Emma. On-going or planned future pregnancies were described as acceptable medical reasons for saying no to donation for parents, if there was another parent who could donate.

  8. Andreas and Emma’s story can also exemplify the dynamics of couple-interviews. Each of the narrators jogs the memory of the other. When Andreas said that he got angry, Emma responded that she reacted differently. She felt frustrated and this resulted in her “building walls” around herself in order to handle “the many blows” that both of the parents and the recipient received during the test procedure. However, she confirmed Andreas’ statement that “one” got angry. She picked up the narrative thread and explained that this made them call the hospitals involved in order to sort things out.

  9. According to their imperative, parents “must take responsibility for the children in their care” and put the child’s interests first. Ribbens McCarthy et al. 2000:789.

  10. In the interviewees’ stories, medical reasons were described as the acceptable ones even though—of course—parents may choose not to donate for various reasons (for example, they may have concerns about long-term risks of kidney donation and such concerns need not at all, we think, be egoistic). Furthermore, parents labeled certain things that professionals would not call a medical reason as a medical reason (such as body size).

  11. Of course, this may be due to our sample of interviewees. Possibly, only interviewees that could present a more or less culturally acceptable story said yes to our project invitation.

  12. It is also noteworthy that in cases where parents have more than one child, taking responsibility for the children in their care and putting the children’s interests first arguably implies taking into account other children’s needs as well as the need of the sick child. However, even though all parents in our study had more than one child they did not engage in reasoning about responsibilities for other children in the family. They did not—as an example—discuss what would happen if parents developed complications after donating and because of this could not take on certain parental duties towards other children.

  13. As seen earlier, this is the approach of a number of laws and policies in this area.

  14. It is important to note what being unable to do X means. A useful distinction is the one between ability and possibility. Take the case of a burning house. If a parent is unable to run into the house and save a child, this means that she or he cannot do so: she or he has not the necessary ability to do so. This would be the case, for example, is she or he could not walk. However, a parent may also have the ability to run in, but the fire may make this impossible or at least most difficult. In the latter case, possibilities are at stake. Now, if love makes someone unable to choose, it means that love constrains this person’s ability to make choices.

  15. We will present conditions for decision-making which one of us has elaborated elsewhere. See Zeiler 2005.

  16. When autonomy is understood as a formal notion, no qualifications are made with regard to the kind of reflection—the procedure—that needs to take place, nor to the substantive content of autonomous choices or acts. What matters is that we can come to a decision and act on it. Elsewhere, one of us has argued that this is an unfortunate characteristic since it allows little discussion of different kinds of choices (Zeiler 2005). Let us, for a moment, leave the discussion about choices in this particular context and consider conditions for choice more generally. Consider the following questions: What if we have been socialized in such a way that we, when facing alternatives P and R, are only able to imagine ourselves choosing between P and non-P and not R or non-R? Or, what if our experiences in a particular field are relevant with regard to our choice of P or non-P, but these experiences are silenced in a number of different ways to the extent that we start doubting that they are relevant or, worse, that we did have these experiences? What if we, then, can come to a decision—need that decision not be differentiated from decisions made in contexts in which experiences are acknowledged and discussed? If one answers affirmative in these regards, then it is also worth making a distinction between conditions that need to be met for someone to be in situations of choice and of autonomous choice. Such a distinction allows a more precise discussion of degrees in constraints on conditions of choices. A choice may, we claim, not be autonomous even if we can decide and act on the decision.

  17. This can be the case if someone has been oppressively socialised, Meyers holds, if this person still has developed an ‘autonomy competence’ that involve a number of coordinated skills, such as skills of self-discovery, self-direction and self-definition, and exercises this competence. It is only through the exercise of these skills that autonomy is achieved.

  18. See Zeiler 2005. The person needs to have the ability to identify what values, beliefs and norms she or he holds to be really important with regard to the particular area of choice and the ability to reflect on in what ways particular alternatives promote, hamper or hide these values, beliefs and norms and whether what really matters to her or him, in the particular area, is promoted in an acceptable way by the alternatives present. The person needs also to have the ability to reflect on whether these values etc. are promoted in an acceptable way by the alternatives present. Furthermore, the person needs to have the opportunity to reflect on what is valuable with regard to the particular area of choice, to decide and act, and the opportunity to develop previous abilities. As long as there are no constraints on abilities and opportunities for autonomous choice, I have such a choice.

  19. The core issue in this conception of autonomous decision-making is whether someone has had the ability and possibility to a certain kind of reflection. Consider now the case when someone has developed certain habits that may with time become internalised virtues. In such a case, this person may typically not reflect on how to act in each and every situation. She or he acts on the basis of internalized virtues. Whereas the particular act may still be praise-worthy, this would not qualify as an autonomous act if she or he had not the ability and possibility to the required reflection.

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Acknowledgments

We are grateful to the interviewees in the project Parental Living Kidney Donation for having shared their stories with us.

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Correspondence to Kristin Zeiler.

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Zeiler, K., Guntram, L. & Lennerling, A. Moral tales of parental living kidney donation: a parenthood moral imperative and its relevance for decision making. Med Health Care and Philos 13, 225–236 (2010). https://doi.org/10.1007/s11019-010-9238-3

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