Rethinking the Conceptual Toolkit of Organ Gifting Rhonda M Shaw

VIEWPOINT

Rethinking the conceptual toolkit of organ gifting Rhonda M Shaw

ABSTRACT Organ transplantation is often spoken of as a “gift of life”. However, the concept of the “gift of life” has been subject to scrutiny over the course of the last two decades within social sciences and bioethics for failing to reflect the complexities of tissue and organ exchange. I suggest a new ethical model of organ donation and transplantation is needed to capture the range of experiences in this domain. The proposed model is both analytical and empirically oriented and draws on research findings linking a series of qualitative sociological studies undertaken in New Zealand between 2007 and 2013. The studies were based on document analysis, field notes, and 127 semi-structured in-depth interviews with people from different cultural and constituent groups directly involved in organ donation and transplantation. The aim of this viewpoint article is to disseminate to a New Zealand audience of healthcare professionals published research promoting an expanded conceptual toolkit of organ donation. The toolkit, which includes the concepts of unconditional gift, gift relation, gift exchange, body project and body work, is designed to provide an explanatory framework for organ donors and transplant recipients and to assist the development of ethical guidelines and health policy discourse.

rgan transplantation is often spoken physical and therapeutic work undertaken of as a “gift of life”, particularly on one’s own body and the bodies of others. Owhere the sale of body tissue and Aside from contributing to social science organs is illegal. However, over the course knowledge about organ donation, the aim of the last two decades, the concept of the of the toolkit is to help patients and families “gift of life” has been subject to critique. involved in organ transfer procedures In light of such criticism, I suggest that a make better sense of their experiences, new ethical model is needed to capture to aid healthcare professionals when the multivalent phenomenon of organ communicating information about organ gifting and to incorporate the range of donation and transplantation experiences experiences in this domain. The model I to prospective donors, donor families, propose is based on an expanded toolkit of and recipients and recipient families, and concepts that include unconditional gift, gift to assist in the development of ethical relation, gift exchange, body project, and guidelines and policy discourse. body work. In short, these ways of framing The proposed model is both analytical organ donation and transplantation can and empirically oriented, and links a series be defined as follows: an unconditional of qualitative sociological studies,1-6 all of gift refers to a one-way altruistic act; the which received research ethics approval gift relation refers to dyadic relationships (VUW 2-2007-SACS; MEC/08/03/027; AUTEC between intimates or people who are 08/179; VUW 16628/4/06/09; MEC/11/ familiar to one another; gift exchange is an EXP/089). These studies were informed anthropological concept that emphasises by debates in sociology and anthropology the social significance of giving, receiving, about gift theory and phenomenological and reciprocating; body project is a term accounts of organ exchange. The objective used by sociologists to refer to the use of of the studies was to examine how research one’s body as integral to the process of participants make moral decisions about identity-construction; and body work, a bodily exchanges, and to investigate the corollary sociological concept, refers to degree to which participant experience

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aligns with existing moral vocabulary to necessarily subscribe to one framework describe the meanings of organ donation consistently or throughout their life and transplantation from a first-hand course. Individual and cultural views may perspective. As such, study participants vary depending on the body part being were invited to consider the salience of given or received, its symbolic significance, altruism and the metaphor of the gift as the specificities of the donor-recipient tools for making sense of their experi- relation, and the socio-cultural, moral, ences. Where vocabulary was out-of-step spiritual and sometimes even political with participants’ accounts, the aim was to views of the participants in relation to rethink it. bodily integrity and identity. Rather than suggesting a single model of organ The project donation based on a notion of the “gift of life”, the framework I propose comprises a The studies were undertaken in New range of explanatory concepts, which are Zealand and are based on document ideally flexible enough to include diverse analysis, field notes, and 127 semi-struc- understandings and experiences. Because tured in-depth interviews of 1 to 2½ hours the proposed framework is provisional, duration, conducted between 2007 and the creation of a meaningful model entails 2012. Three studies were undertaken by ongoing data collection, analysis and the author and examined the views of 19 hermeneutic reflection. Some concepts living directed kidney donors, six living may not translate well outside the context non-directed kidney donors, nine members of the global North, and some will be more of deceased donor families, and 27 trans- applicable to certain types of donation plant recipients of kidneys, lungs, and than others. hearts. Fifty-one background interviews with expert academics, stakeholders and healthcare professionals (HCPs) support Unconditional gift the project. These interviews include In this description, organ donation is discussions with 15 intensivists and donor conceptualised as a gift, given freely and and recipient coordinators, and 11 trans- without remuneration or external reward. plantation specialists (nine surgeons and The gift is assumed to have a clear-cut nephrologists and two nurses). Study meaning affixed to altruism, which is participants primarily self-identified as regarded as a disinterested one-way act. New Zealand European or Pākehā and The donated organ is given unconditionally were interviewed by the author. Fifteen by the living organ donor or deceased living organ donors, organ recipients and donor family. Some proponents of this whānau, 12 of whom identified as Māori, account maintain that there should be were interviewed in a connected study by no relationship between the donor and an associate investigator. This paper is an recipient or their respective families. abridged version of a much longer article This way of characterising organ donation by the author.7 The rationale for a summary has been adapted for use by both HCPs version of the article is to promote read- and transplant recipients. Some trans- ership among a New Zealand HCP audience. plant recipients use gift of life discourse to For an extended discussion of the research express their gratitude to deceased donor this paper draws on, and for details about families or to anonymous living organ study methods and supporting references donors. Although deceased donor families see the publications listed below.1-7 might act altruistically, they do not typically Empirical research shows that people describe donation in terms of a gift. do not think uniformly about organ Various HCPs, including transplantation donation in unquestionable moral terms specialists and surgeons, support the view as an altruistic gift. Rather, they under- of organ donation as an unconditional stand organ transplantation practices in gift. Some use the term gift to distin- a variety of divergent and overlapping guish deceased and live donation from ways. In practice, people hold a combi- commercialisation. They contend that gift nation of views about organ donation and language transmits the positive message transplantation simultaneously, and do not that donation is a noble and morally worthy

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act. The term gift is thus an important part emotionally related donors often do not see of their linguistic toolkit. It is useful for their donation as a gift because they feel educational and promotional purposes, it they get something back from donating an can be used (in the right circumstances) organ, such as alleviating the suffering or with deceased donor families to thank them saving the life of a family member or loved for their donation, and in conversation with one, or improving the recipients’ health and transplant recipients in the clinical context. thereby making life better for the whole In addition, some HCPs maintain that family, themselves included. highlighting the magnitude of the gift serves to encourage transplant recipients to value Gift exchange the donated organ, and to show gratitude In jurisdictions where organ commerce is to the donors by taking responsibility for prohibited, lay accounts of organ donation looking after themselves post-transplant. and transplantation often come closest to a Viewing the gift as a one-way altruistic act gift exchange model. In this understanding, enables transplant recipients to accept the for social and cultural reasons, people often donated organ as their own, rather than feel morally obligated to reciprocate the thinking about the organ as an alien body gift of an organ in a meaningful way. A gift part from a foreign body. Being able to or gift exchange relationship is based on integrate and accept the newly donated giving, receiving and reciprocating; it is not organ is beneficial for the post-operative to be confused with pure altruism, which is emotional and psychic wellbeing of trans- a one-way transaction. plant recipients. Persons who subscribe to a gift exchange model of social life may encounter diffi- Gift relation culties in a closed donation system In this understanding, the gift relation governed by a social-organisational imper- involves face-to-face gift giving, often of an ative of confidentiality and anonymity. asymmetric nature, between people who For some transplant recipients, the need have prior personal or intimate relation- to express gratitude to the donor, donor ships with one another. In organ exchange family, or to the health system is linked to the archetypal gift relation occurs between strong affects. The desire for contact with a parent and child, although it may extend the donor or donor family can range from to living organ donation by donors who are curiosity, to desire for knowledge about biologically or emotionally related to the the donor, a desire to meet the donor, or recipient (sibling, spouse, or friend). This a desire to establish a relationship. For relation is unlike anonymous donation to a some transplant recipients, for whom stranger, in that non-directed donation entails integrating an organ from another person a cognitive recognition of the other and feels like incorporating a part of the donors’ detached reflection on the other’s suffering. genetic makeup and personhood, making If organ donation occurs as part of a gift connection with the donor or donor family relation, the donated organ often goes unrec- is important. ognised as a gift by the donor and recipient. Anxiety and ambivalence around In other words, the motivation that prompts donation and transplantation can be organ donation within some family and exacerbated when donation occurs across kinship groups, and between close friends, different kinds of body-subjects (eg, from is not articulated in the deliberate language male to female or young to old), or between of moral decision-making. This is because persons who subscribe to different belief biologically and emotionally related donors systems and worldviews. For some cultural often make instantaneous, ‘snap’ deci- groups, such as the indigenous peoples sions about donating before consciously of Aotearoa New Zealand, Australia, and weighing the risks, benefits, alternatives, and North America, connection may be espe- outcomes of their donative offer. They see cially important, as the sharing of biological their decision as ‘natural’ or ‘the right thing matter such as body parts implicates entire to do’. Their decisions are often based on kin networks, and has ramifications beyond normative expectations about their care- its effect on individual donors and recip- taking and caregiving roles. Biologically and ients. Organ donation and reception not

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only creates intersubjective bonds between As with all projects, organ donation is people, it entails ongoing responsibilities something that the living donor plans. to those people and their families. To fail The intention to donate an organ, which to make connection with a donor or their may or may not be coherently expressed family, in the form of gratitude or some as part of an altruistic value system, kind of reciprocity, would be considered is carefully deliberated; from the first disrespectful and socially unacceptable. A inquiry about donation and the decision gift exchange framework may therefore be to donate, through to the medical tests preferred by some donors and recipients, donors are required to undergo and because it emphasises the interconnect- the eventual surgery. For non-directed edness between persons who give and donors who do not have an established receive body parts, and foregrounds the relationship with their recipient, the impact bodily exchanges can have for donation event has a finite end. That is, relational ontologies spanning beyond the despite their view that organ donation is interpersonal to the cosmological. a gesture of shared humanity, the matter of kinship and relatedness through the Body project bio-medically engineered transfer of their kidney to the body of another person is An alternative way of understanding not a key concern for them. living organ donation is to think about it as a body project. Classifying organ donation as a body project refers to the Body work way people purposively use and transform Body work refers to work undertaken their bodies in a variety of ways to commu- on one’s own body and to work performed nicate and express different ideas, values on the bodies of others. Organ donation is and beliefs. While living organ donors are body work that is embedded in a network not concerned to transform their bodies to of caring relationships that involve HCPs, enhance appearance and body image—as numerous stakeholders, donors, transplant is the case with most late twentieth and recipients, families, and friends. twenty-first century projects that involve Organ donation requires the interven- work on the body—they focus on what their tions of a hierarchy of HCPs, who work on body can do and how it can be used to facil- the bodies of deceased donors, living organ itate wellbeing for other people. In donative donors, and transplant recipients. This body projects, the donor makes an indi- work includes the activities of healthcare vidual decision to transform his or her body assistants who mediate between patients for the benefit of another person, with the and nurses to provide a range of services help of biomedicine and technology. in hospital, through to ICU physicians, This description is in keeping with specialists and transplantation surgeons, the perspective that many living who literally engage with and operate on non-directed donors hold. While the the physical bodies of patients in their care. desire to donate an organ is performative Body work involves work on the body- of the donors’ moral identity and sense self by donors and recipients to prepare for of social responsibility, insofar as it is and recover from organ transplantation. an action that is directed toward others, To donate and receive organs, donors and the donative decision may also be recipients have to be relatively fit and experienced by the living organ donor healthy, as well as being able to demon- as self-defining. From the non-directed strate to relevant HCPs the capacity to act donors’ perspective, organ donation is autonomously. Complying with clinical an extreme example of civic-mindedness and psycho-social assessment criteria and is consistent with a donation mind- takes effort. Living donors must learn the set. Although improved self-esteem may requisite communicative and moral reper- be a consequence of donation, studies tories to convey their donative conviction show that this is not a primary motivator. to HCPs. Being able to articulate altruistic Living organ donors may give time, blood, intent, in terms of “gift of life” rhetoric, is money, and offer services to others, and part of that package. Likewise, transplant often on a regular basis. recipients must adhere to extensive self-

care routines by taking responsibility for they involve nonpaid labour. This labour their diet, medication, and lifestyle, as part is increasingly outsourced to the home of their new postoperative health regimen. as a consequence of health philosophies Body work also involves the activities of and programmes supporting self-man- non-remunerated caregivers: a network of agement and due to economic reforms in invisible others made up of family members the formal health sector. The body work and friends, who help the living donor and concept enables us to take into account transplant recipient recover and heal post- the costs incurred by home productivity operatively. This work includes emotional, losses associated with organ donation psychological and moral support, accom- and transplantation, which need to be panying family members and friends to considered when evaluating the economic hospital visits, and providing care during effects of organ transfer for patients and convalescence (ie, housework, dependent those who care for them. Body work thus care, and miscellaneous daily activities). goes beyond the gift-commodity binary to Body work is important to consider permit discussion around compensation because it links all the participants involved for organ donors, recipients, and their in organ transplantation procedures. No respective families. matter which of the previous concepts donors, recipients, and HCPs prefer to use Conclusion to conceptualise organ transfer procedures, The expanded conceptual toolkit there is no question that they will all be presented here sketches different concep- involved in body work of some kind or tions of organ donation and transplantation, another. The danger of sentimentalising based on theoretical analysis and empirical organ transplantation as altruistic is that data drawn from sociological research. The it can conceal the mundane, physical and author’s view is that gift terminology in bodily aspects of this work and the value the context of organ donation and trans- associated with it. plantation is useful, but has limitations. Body work not only focuses on HCPs’ Principally, it does not take socio-cultural expertise, it acknowledges transplant and economic context into account, or recipients’ activities of self-care, and the different permutations of exchange rela- social care management and welfare of tions between donors and recipients and donors, those they care for, and those who their respective biographies. In contrast, care for them. It thus accounts for the the proposed toolkit incorporates some of complex relational and material aspects of the nuanced meanings that donors and organ donation and transplantation that recipients attribute to their decision-making involve labour on the body, without losing and experiences, as well as including the sight of its important metaphysical and perspectives of HCPs and analysts that may value dimensions. prove useful in the provision of pre- and Furthermore, the concept of body work postoperative care and informed consent may permit consideration of some of the procedures in both the clinical context and indirect costs associated with transplan- policy development. tation that are currently hidden because

Competing interests: Nil Acknowledgements: Thank you to the research participants who generously participated in this research programme. The author is grateful to the Marsden Fund and Kidney Health NZ for their support. Author information: Rhonda Shaw, Senior Lecturer, School of Social and Cultural Studies, Victoria University of Wellington, New Zealand. Corresponding author: Dr Rhonda Shaw, School of Social & Cultural Studies, Victoria University of Wellington, PO Box 600, Wellington 6140, New Zealand. [email protected] URL: www.nzma.org.nz/journal/read-the-journal/all-issues/2010-2019/2015/vol-128-no-1422-25- september-2015/6667

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