New Zealanders’ perceptions of gift and giving back as participants of organ transfer procedures

Abstract

There is an established international tradition of empirical research in anthropology and sociology on organ donation and transplantation. However, little empirical research on this topic has been done in New Zealand. This article contributes New Zealand data to the literature, drawing on qualitative research investigating the experiences of 78 Pākehā and Māori and their perceptions of bio-identity in the course of tissue exchange. In line with international studies our findings indicate the language used to promote organ donation as a disinterested, non-reciprocal and unconditional act does not always reflect the experiences of those involved in organ transfer procedures. At the same time, transplant recipients often speak of compelling obligations to reciprocate the ‘gift of life’. While these are common features of organ transfer generally, we suggest the psychosocial wellbeing of donors, families, recipients, and whānau rests on careful attention to the cultural specificities of this experience.

Keywords:

• organ donation and transplantation
• gift terminology
• giving back
• shared corporeality

Introduction

In New Zealand, as elsewhere, there are more people waiting for organ transplants than available organs. From a medical perspective the lack of availability of organs for transplantation is a problem. Supply, however, is relative to demand. Various factors account for increased demand, including clinical life-extension and shifts in attitudes towards longevity and mortality, particularly for people living in affluent societies. According to Fox and Swazey (1992:199), the dominant biomedical ethos of organ transplantation to ‘maintain life at any cost’ glosses over significant social, cultural and ethical issues surrounding the transfer of body tissues and organs from one person to another, not to mention transforming the line between life and death. This article, detailing research investigating New Zealanders’ experiences of organ donation and transplantation processes and their perceptions of bio-identity in the course of tissue exchange, acknowledges the significance of Fox and Swazey's concerns.

The discussion is based on qualitative research comprising four separate, interlinking projects involving 78 New Zealanders who have been living organ donors, donor and recipient family members, transplant recipients, transplantation specialists, intensivists or donor and recipient coordinators.1 Two separate studies with health professionals and members of stakeholder groups (27 participants in total) and a study with 24 organ recipients, 13 living organ donors and nine donor family members were undertaken by Author A. Participants in these studies identified as New Zealand European or Pākehā. In a connected study, 15 living organ donors, organ recipients and whānau, 12 of whom identified as Māori, were interviewed by Author C. The overall project had several aims: to assess the relevance of ‘gift of life’ terminology to describe organ transfer procedures as a model for ethical practice, to detail the experiences of organ donors, families and transplant recipients, and to document how perceptions of embodiment and identity influence different groups of New Zealanders’ attitudes towards donating and receiving body tissue and organs. In short, the study was designed to address the meanings people attached to transferring and incorporating tissues and organs for social relations. This aspect of the research was theoretically informed by phenomenological accounts of tissue transfer, specifically the work of analysts influenced by Merleau-Ponty's (1962) thinking, such as Cherry et al. (1999), Haddow (2005), Varela (2001) and Waldby (2002). Increasingly, other researchers engaging in empirical research in this burgeoning area have adopted a similar approach (see Body & Society Special Issue: Bodily Integrity 16(3) 2010; Shildrick 2008; Shildrick et al. 2009; Svenaeus 2010; Vamos 2010).

The value of phenomenology for this study is that it recognises the social and cultural characteristics of embodied existence and being-in-the-world. A key insight of the approach is that body and self are inextricably connected. Since our bodies are the medium through which we understand and experience the world, modifications to the body that disrupt bodily integrity during organ transfer processes (e.g. the loss of body parts and/or the relocation of foreign body parts in others) impact peoples’ sense of self and identity. So, while the focus of transplantation advocates and clinicians in the business of saving lives tends toward increasing organ supply to meet demand, the principal research focus of this project is to describe peoples’ experiences of organ donation and transplantation at a psycho-social and cultural level and to begin to examine the outcomes of these processes. Like Shildrick (2008) and Shildrick et al. (2009), we are interested in how donors, donor family members and recipients adjust, adapt and experience their ethical sense of self in relation to identity following organ transfer procedures.

The qualitative interviews for the study were undertaken between 2007 and 2010. They were open-ended, with key questions structured around guiding interview themes.2 Interviewees were asked about the ‘gift of life’ metaphor, the ethics of organ donation, procurement and transplantation, their thoughts on embodiment and identity, and questions about the significance they attached to intercorporeality as a symbol of sociality. Data for this article were coded manually into themes by Author A and Lara Bell, a research assistant, and then analysed. In this article we discuss the themes of the gift and the notion of giving back, encapsulated by sub-themes of remembering, thanking, and caring for self, others, and society.

Perceptions of the ‘gift of life’ metaphor

The metaphor of the gift is ubiquitous in debates about organ and tissue exchange in the public domain and in the media. In New Zealand, the term is used by organisations and agencies in institutional brochures, information leaflets and on websites to promote and encourage deceased donation and, more recently, living organ donation as an altruistic universal practice on a policy level (Shaw 2010). Discourse around the gift, the gift relationship and gift exchange has been discussed ad infinitum in the international literature on tissue donation (Murray 1987; Titmuss 1997; Siminoff & Chillag 1999; Healy 2006; Waldby & Mitchell 2006; Fox & Swazey 2009). It is not our intention to rehearse these debates here; suffice to say numerous commentators agree that gift terminology in the context of tissue transfer is politically loaded and non-neutral (e.g. Childress 2006).

The notion of the gift is not straightforward in studies documenting peoples’ accounts of their experiences of organ donation and transplantation either (see Fox & Swazey 1992; Siminoff & Chillag 1999). Research findings from our study indicate not everyone thinks of their donative actions as gifts, and when they do, the gift is conceptualised in multiple, complex and sometimes contradictory ways (Shaw 2010; Webb & Shaw 2011). An overwhelming majority of the 65 Pākehā participants whose transcripts are discussed in this article (approximately n=40) were comfortable or felt neutral about conceptualising organ donation as a gift, at least when questions about the term were first broached in the interview conversations. The following quote from a kidney recipient typifies this view:

Well, it's the gift of life basically. It's as simple as that, isn't it? Yeah. I've never really put a lot of thought into whether any other terminology is, ah, better, etcetera. But I mean, let's face it, you can only be on dialysis for so long. (RM9, p. 11)

Another kidney recipient stated:

Yeah, it's appropriate, very appropriate I think. I mean, donor-to-recipient gift. I can't think of anything that could be more appropriate really. I mean I wouldn't be sitting here now if I hadn't had it that's for sure. (PDRM2, p. 28)

Gift terminology appeared to resonate with many of our interviewees as an appropriate, easy-to-use catchphrase although it was used intuitively and without prompting for only one-fifth of those we interviewed. One interviewee talked about watching a DVD and reading an accompanying brochure stipulating kidney donation as a gift, commenting: ‘And when I saw that word I thought, oh yes, it is a gift. But it was a word that jumped out at me. It's not a word that I would instinctively use. I associate gift in a more trivial way than I do the donation of an organ.’ (RF3, p. 21) Even those who were comfortable with gift as a descriptor began to question its applicability once they reflected on the notion in the course of their interview. It seems the term resonated as initially acceptable, but its meanings began to unravel as participants discussed the specificities of their own experience.

An anonymous (Pākehā) living organ donor remarked:

But because I don't know the person, I don't know; it's a hard one. I've never really, you know, apart from when I look at the certificate [awarded at a formal ceremony by the Governor General for giving ‘the gift of life’], I don't really look on it as being a gift of life even though I know it is essentially. (ADM1, p. 8)

Rather than gift, many transplant interviewees and living donors preferred to speak of the donative act as being given a ‘second chance at life’ or new lease of life. Consistent with Sharp's (2006) research in North America, a number of transplant recipients in our study stated they celebrated re-birthdays or second birthdays to commemorate the day of their successful transplant operation. One Pākehā recipient said post-transplant existence was ‘living each day like it's a gift’ (RM11, p. 21); such was the impact of the transplantation operation on his new identity.

Notwithstanding agreeability of the term for most research participants, many also expressed reservation about the gift as ready-to-hand terminology for use in everyday-life situations. The donating partner of a Pākehā kidney recipient, for instance, suggested that from ‘[my] point of view it's not a gift of life, it's giving him his life back.’ (PDRF2, p. 25)

A Pākehā kidney recipient remarked:

Well, I mean, it's a gift of life. […] I've said, ‘Well, it's a gift of life’, but as for talking to my brother [his kidney donor], I don't think, I don't say to him, ‘you've given me life’. We just get on with things. (RF5, p. 10)

While many health professionals perceived the term as acceptable for promotional and educational purposes, some explicitly stated they did not use the term themselves, confirming findings from an initial study (Shaw 2010). One transplantation specialist remarked that gift language was used:

To imply the selfless act of giving to another person to, in this situation, improve their quality of life. […] My idea is that that's the connotation. No, I don't use the term gift with patients, I suppose. I don't know why specifically I don't. I don't think I've ever thought about that in any great detail, but I think the term ‘gift’ is appropriate. But I think that is based on the connotations I perceive with gift and those could be different based on different people, but I would imagine the majority of people would see it in those terms. It's not giving something and expecting a return. (M2#2, p. 10)

Officially the term gift connotes tissue exchange as a one-way transfer of body parts, and, contrary to anthropological debates about the circulation of gifts as part of an economy of exchange relations, it is promoted as voluntary and non-reciprocal. Health professionals tend to view the donative act as gift in this way, arguing that deceased organ donation, in particular, is best conceptualised as unidirectional, requiring no payback or return on the part of the transplant recipient other than gratitude and adherence to a post-transplant regimen of constant care of self.

For instance, a transplantation specialist stated:

A gift is an exchange of something that is done for a reason other than personal gain; it's a one way transfer that is done altruistically. It's not given for the purpose of getting something in exchange. It is a one way transfer. […] That's how I believe they think of it now currently in New Zealand. Both donors and recipients, whether they get the organ from a live donor that they know or whether they get the organ from a deceased donor, use the word gift. (M3#2, p. 10)

Several intensivists and donor coordinators insisted that transplant recipients are more inclined to use the metaphor of the gift of life to communicate their experiences than donor family members. This concurs with Siminoff and Chillag's (1999:36) research, although we also noted that use of gift phraseology by recipients in our study was not universal.

Some interviewees stated that the language resonated for them in a meaningful way, but took gift to mean something other than a one-way transaction. Some thought the terminology trivialised organ donation, procurement, retrieval and transplantation due to over-use, saying the process of organ transfer and its meanings exhausted what ‘gift’ could capture; but few people could come up with alternative terms other than ‘donation’. The view that deceased donation was more of a sacrifice than a gift was also raised by one group of health professionals. One intensivist remarked, the term gift ‘just doesn't feel like it encapsulates [pause] the workings of what's going on in peoples’ minds when they're at the sharp end, having this discussion, making these decisions…’ (M1, p. 21).

A Pākehā transplant recipient commented:

I think for me personally it's rather a glib term, and it's been used so much for so long that it's lost its meaning. Any they use that same term in other areas. I heard it on TV recently, I can't remember what it pertained to, but it had nothing to do with transplant. I think they were selling some herbal medicine or something like that. So for me personally it has become too overused and too glib. Um, but having said that, what would I replace it with? Nothing, because it is an expression that most adequately describes what it is. (RM1, p. 18)

A Māori kidney donor stated that:

gift language takes away that this is a real medical issue and very real problem for our health system and the people that are affected and this is medical treatment that's available. And we should try to encourage people to do it and not turn it into some kind of spiritual experience. (PDRF4, p. 15)

The point this participant makes pertains to New Zealanders’ high rates of chronic kidney disease, especially among Māori and Pacific peoples. The interviewee's concern is that only invoking traditional cultural and spiritual imperatives can limit the understanding of donation and transplantation by Māori. As well as this, over-emphasising the intercorporeality of organ and tissue transfer as a psychic and cultural phenomenon may exacerbate anxieties around donation and transplantation and deter donation from these groups, particularly for deceased donative acts.3 Additionally, living donation may also provide a practical solution to improving health outcomes in light of deep-seated cultural and spiritual beliefs.

Many of our interviewees recognised the ambiguity of gift as a concept. Although the gift of life metaphor is invariably used to distinguish organ donation from market exchange in jurisdictions where the commercialisation of body parts is prohibited, a number of participants commented on the association of gifts in consumer culture with materialism and for that reason felt the term was inappropriate. Several even characterised the gift in the context of today's market economy as superfluous, disposable, fungible, and lacking significant meaning. Participants also talked about the image of a gift in terms of presents, having a price, wrapped in bows to be exchanged with family and friends. As a Pākehā donor family member put it when directly prompted by the interviewer about gift language:

Um it's, it's an interesting one. Uh, yes it is giving, but it's not a gift [laughs]. It's not a parcel, it's not something wrapped up in a bow; it's not something pretty even. But it is a giving, yeah. (DFF7, p. 10)

The point this participant makes about presents as tangible things reiterates an observation made in the larger study by an intensivist (see Shaw 2010, p. 613). Here, the intensivist suggests that construing organ donation as a gift-present debases the entire organ donation and transplantation process. In his view:

Transplant professionals often conceptualise it [organs] as a gift, because they see it arriving as a gift, it's a little something that comes in a box surrounded by ice. It's often gift-wrapped, and comes in a nice little white cardboard box with big bold read writing on it saying ‘human organ for transplant’. It looks exactly like something you would find under your Christmas tree. (M1)

For some interviewees organ donation to strangers was construed as a pure gift because the anonymous donative act was perceived to be disentangled from relations of obligation and reciprocation. For these interviewees the gift is conceptualised as unidirectional, disinterested and altruistic. The following quotation from a Pākehā kidney donor illustrates this perspective:

No, I think probably the idea of a gift might work to my thinking, if you were giving it to someone who you weren't related to. If it was a deceased person giving a kidney to someone you could say it was a gift because you didn't even know them, you're detached so you really are giving something. I see it from my perspective as a mother that that is not a gift because that is what a mother would do if she can. (PDRF3, p. 23)

In all these permutations, interviewees’ talk revealed the paradox of the gift and its complexity in the context of contemporary consumer culture. Some participants made reference to the donative act as much ‘more’ than a gift, remarking that the term was woefully inadequate to describe the generosity of donors and donor families and the magnitude of the organ transfer experience.

On this view, a male transplant recipient said:

It's not sort of just a moment of altruism and generosity; it is both of those things in a huge, huge sense. But I think perhaps we, you know, when we think of the concept of a gift we don't actually think in terms of the tangible donation of an organ, um, we think of the intangible but very significant donation of life. (RM10, pp. 10–11)

Some participants referred to the donated organ as an ‘extraordinary gift’. A Pākehā recipient and several Māori interviewees referred to the donated organ as ‘taonga’, meaning treasure or highly prized gift, and one Pākehā transplant recipient described her donated organ as a ‘treasured gift’ (RF1, p. 9). This cultural comparison may well end here, especially if the taonga is more than an object. As Henare et al. (2007) point out, as extraordinary gifts invested with agency taonga animate obligations to reciprocate and return the gift. In conversation with Author C and a whānau member, an interviewee said her heart transplant was ‘sort of like an adopted treasure. It's looking after me until I go again, or I'm looking after it until I can give it back to…’ (Hera, p. 17) ‘the donor family’ (Puawai, p. 17). Another description likened the donor's heart to a ‘whangai child’, and also seeing themselves as ‘whangai’ after the operation; a Māori term referring to fostering or adopting a child.

These understandings of the gift as embodied and embedded in social relations align with phenomenological accounts of the body as both invested with subjectivity and intercorporeal. In addition, as empirically substantiated by Sque et al. (2007), recognition of the religious dimension of bodily gifts as sacrificial acts of communion with others takes the donative aspect of this process beyond a ‘feel good’ representation of donation as gift. In the case of deceased donation, one-sided emphasis on gifting effaces a darker side to donation by rendering invisible the sacrifice donor families make when consenting to donate their loved one's body in situations of sudden death, bereavement and grief. Although transplantation specialists and intensivists accept lay use of gift terminology as a personal subjective preference in our study, they too make clear the sacrificial aspect of organ donation as an event. For one:

‘Gift’ sort of makes the whole thing very positive and implies there are no negatives about it and that's certainly not at all the case. ‘Gift’ is probably obscuring the issue. (M1#2, p. 7)

Likewise, an intensivist stated unequivocally:

I don't have problem with it, but I don't use it. I don't use it because I think it is a little too (um), hard to get the right word, too namby pamby […] a gift is something I give you out of pleasure. This is not a pleasurable event, this is a painful event, and so I don't think it's a gifting process, at least not in the acute phase […]. (M3, p.12)

Donor family members tended to corroborate this observation. In an emotionally open interview a donor family member explained experiencing ‘a lot of guilt’ over donating her mother's body tissue because it was her gift rather than her mother's, who ‘didn't consent to this at all’. She went on to say, ‘to give someone the gift of sight is a wonderful thing [but] I think also the uncertainty of my mother's intentions make it a bit harder to see it as a gift. I suspect she would have been quite happy with the outcome.’ She then added it was a decision ‘made hastily and kind of railroading the rest of the family because they hadn't thought about it either’. (DFF2, p. 11) This reiterates the point Childress (2006) makes about referring to deceased persons as ‘donors’ when consent to give body tissue or organs is made by family members and not the person concerned.

Giving back

While deceased donation can engender suffering for families making decisions about organ donation, transplant recipients also experience psychological and emotional distress in the course of organ transfer despite improved health outcomes post-transplant. In keeping with the observations of Siminoff and Chillag (1999), we suggest that discourse about organ donation as an ethical act symbolising pure gift on the one hand, disinterested, non-reciprocal and unconditional, and culturally embedded notions of the gift relationship on the other as engendering social bonds and ties both fail to fully account for the reality of the organ transfer experience. Rather, the predicament of organ donation afflicts the transplant recipient with the aporia of the gift. This situation is described in the following quotation from a transplantation specialist, who asserted, ‘it is vital that the recipient of a transplanted organ takes ownership, if you like, of that organ, and I think it's very appropriate that they are mindful that this is given from a family at a very difficult time’ (F1#2, p. 6). For transplant recipients this impasse is practically worked through by ‘giving back’. Forms of giving back, to self, others and society, are efforts to recognise the ‘gift of life’ and respect donors’ and donor families’ privacy.

Although organ donation is ideally voluntary, altruistic and one-way, internal and external psychological and emotional pressures exist for transplant recipients not only to acknowledge the gift, with gratitude, but to repay this extraordinary act of generosity. The gifted organ frequently places an overwhelming sense of obligation and debt on the shoulders of the recipient. Putting herself in the shoes of the transplant recipient an anonymous living organ donor put this plainly:

I think from the recipient point of view… if I was the recipient of a kidney given to me by a complete stranger, I would always feel, um, that I couldn't thank them enough, or you know, pay back enough. (ADF1, p. 4)

The following quotation from a transplant recipient reiterates this view:

Funnily enough I've experienced both the guilt and the immense gratitude and sense of debt. There's no doubt about that. There's no getting away from it. And one doesn't go and get all effusive. But one of the questions that plagued me, knowing my donor, is just how you do thank them? (RM10, p. 20)

Likewise, interviewees talked about thanking ‘the surgeons and the medical people’. One commented, ‘You know, I thought about how to thank all these people and I came to the conclusion that I can't. There's just nothing that's enough.’ (Hera, p. 21)

While transplant recipients are required to accept the donated organ as theirs from the outset they are constantly reminded, through gift rhetoric and in interactions with health care professionals within the medical setting they come into contact with, how lucky they are to be recipients of such a scarce and precious resource. As Siminoff and Chillag (1999) note, gift rhetoric is not neutral with respect to engendering these feelings of indebtedness. Rather, ‘the gift metaphor and its associations […] manipulate patient behaviour’, by ‘magnifying recipients’ sense of obligation and guilt’ (1999:39, 40). Recipients know they have received a scarce resource, that they have been given a second chance of life. Such magnanimity is sometimes difficult for recipients to assimilate. The situation is intensified because they feel simultaneously accountable to the donor, the donor's family, their own family, and the health care system.

Health professionals are aware of the predicament recipients are in and will endeavour to sensitively negotiate adherence to self-care regimens in the best interests of their patients. As the transplantation specialist cited above put it; ‘I think there are a lot of people who see it as a gift and a very precious gift’, but ‘there's an awful lot going on’ with the donation and transplantation process. She went on to say:

Not only did a person die, not only has the family been tremendously altruistic and generous at a time of possibly their greatest grief ever, and I think the word ‘gift’ in a way encapsulates that; that it is an active process on behalf of a family to say this is yours. And I also use it to say that they've given it to you to be yours, and not to forever think that I'm carrying a part of a dead person around with me. (F1#2, pp. 6–7)

This means not only phenomenally incorporating a foreign organ from another human being, which requires immunological co-existence with the alien organ, but also accepting the organ as one's own at the same time as acknowledging its gift status, in order to repay it (see Varela 2001). This paradoxical predicament was articulated by transplant recipients in our research who felt compelled to repay the gift, living this out in a variety of ways. The gratuity and reciprocity of transplant recipients and their families included writing thank you letters and giving gifts, remembering and memorialising donors, participating in research, engaging in ‘outreach’ work, giving lectures, and talking to the media.

Thank you letters, outreach work and media interviews

An institutionally recognised way for transplant recipients to acknowledge organ donation is to write thank you letters to their donor family or anonymous living donor. In New Zealand, deceased and anonymous live donation is governed by organisational rules restricting the release of personal information about donors and recipients, as well as prohibiting donor-recipient contact. Transplant recipients do not know the name of their donor, contact details about the donor's family, or their donor's age or gender, although sometimes the latter is discovered informally or by accident. Due to anonymity protocol protecting the privacy and rights of donors and donor families, thank you letters from transplant recipients are passed through the hands of donor and recipient coordinators. The rule is the same for donor families who reply to letters.

Although contact between donors, donor families and transplant recipients and their families is not encouraged, thoughts of the donor or donor family and obligations to give back were clearly present in transplant recipients’ minds as expressed in the interviews for our study. Participants showed respect for donors by remembering them in prayer, carrying photos or visiting the grave of their presumed donor, celebrating ‘second’ birthdays, giving gifts (sent through coordinators or directly in the case of blood and emotionally related donors), and attending Thanksgiving services in city cathedrals. Privately ‘thanking’ the donor was common. One transplant recipient said, ‘In seventeen years there's hardly been a day gone by that I haven't thought of [my donor] and quietly said thank you to her (crying)’ (RM1, p. 12). Another remarked, ‘I think about the donor family and the donor on a daily basis […] they are always there’ (Ranginui, Pt. 1, p. 11).

Although letter writing is a sanctioned way for recipients to show gratitude, interviewees often expressed anguish over writing to the donor family, not knowing what to write, and guilt because they had not yet written. Many took months, even years, to write a letter. Some could not write. A female recipient of two kidney transplants said, ‘Neither of the times have I contacted. I have absolutely no idea of what I would say. I just couldn't bring myself to. The first time I tried to write a few things and when my words were entirely, entirely inadequate I gave up.’ (RF3, p. 10) Similarly, a male heart recipient also experienced difficulty over the letter writing process, saying:

Obviously I'm thankful and I'm glad that that's what they considered [organ donation]. But I tried to write some letters …. We can write letters anonymously, and I just couldn't, it was just garbage. Emotionally it wasn't garbage, it was just straight from my heart and you just couldn't read it. You can't tell someone something like that after they'd given you; you know given away I guess a part of their self or their family. If you know what I mean, I mean you need to be articulate and considerate and thoughtful, and it's just, I couldn't do that. I tried and tried and tried, it's, and I, and I remember [the Transplant coordinator] saying, ‘Just write something to the point, you know, just be simple’, but […] I think I probably should just do that, but it just doesn't seem like reciprocity, it doesn't seem like giving anything significant. (RM11, p. 14)

Some participants found ways of showing reciprocity beyond the letter-writing process. A number had offered to be subjects for medical research, not to mention participating in our research project, and numerous people gave public lectures or talks on Marae and at various medical schools to students and staff. Approximately 17% of research participants (excluding health professionals) had spoken to the media or had personal anecdotes published on the subject of organ transfer and their experience.

The deserving recipient

Although the donor-recipient relation is anonymous and ostensibly disinterested, a moral economy—to use the language of an intensivist (M1, p. 25) in this study—nonetheless operates to constantly remind the transplant recipient of the duty to care for the scarce and precious gift they have received through the donative act of a stranger. Recipients we talked with spoke of commitment to strict regimens of self-care as proof they have the right kind of attitude and qualities to be deserving of organ transplantation. The bottom line for patients is that they should care for their bodies and the transplanted organ by eating and living well, watching fluid intake, taking moderate exercise, and observing medication rituals so that the organ does not ‘go to waste’. As stated previously, this is carefully monitored and regulated by various health professionals within the medical setting. For instance, F1#2 (p. 8) said, ‘you want them to take their tablets, you want them to keep fit and you want them to attend appointments, that's all we ask.’

Transplant recipients we spoke with were patently aware of the moral economy supporting tissue donation. A Pākehā man, who received a corneal transplant in the 1970s, explained that after his operation when he was lying in bed with his eyes covered in bandages:

The donor's doctor, I remember, came to see me. He was supposed to look me over and see if I was a worthy recipient. […] I knew what the idea was… So he could tell the family that I was very grateful. So the operation was performed successfully. […] They [donors] want to feel that the recipient is worthy. Why not? It's a huge sacrifice. (RM5, p. 2; p. 9)

A recurrent theme participants in our study voiced concerned interviewees’ own feelings of moral worth and whether they deserved to receive the donated organ. As Atarata said, ‘somebody has given you this organ so that you can have a life again and if you don't live it you let yourself and them down’ (p. 14). As stated above, a number of interviewees, including a handful of health professionals, viewed organ donation as one-way and debt-free. However, at least one-fifth of study participants referred to the immense obligation that comes from being a transplant recipient, commenting that this is either overwhelming or impossible to repay.

For instance, Hera, a Māori heart recipient, commented she would be ‘very apprehensive’ to meet her donor family ‘because I don't want to disappoint them. I might not be what they expected, what they had thought up in their mind’ (Hera, p. 18).

Another Māori transplant recipient felt similarly in respect of feelings of worthiness:

I've got to say that I'd be concerned that it, you know, would I meet their expectations because they obviously know the donor, and it's their gift? And I would be a little bit concerned because I wouldn't want to have to try and mould my life to a way that was expected from the donor's family. You know? Even if they didn't put it on me I would feel pressure to perform to what I perceived and want to see from a person who they gave a gift of life to. You know? (Ranginui, Pt. 2, p. 1)

This feeling of apprehension about meeting the donor family was directly reiterated by five interviewees. As one Māori interviewee said:

I think for some people, if it's a major organ and to receive a transplant someone has to die, I think it helps to know in terms of acknowledging whakapapa and utu as well. Now, what I mean with utu is reciprocity rather than revenge, and to honour that person for what they've done, and that person's whakapapa. (Hine, p. 7)

In this quotation the interviewee refers to the addition of the new organ as affecting the recipient's embodied self and alludes to ramifications of shared corporeality for kinship relations. The account positions the body as a base for self and identity, which cannot be conceptualised before or outside the bio-social relationships in which an individual is embedded. Not surprisingly then, some study participants commented on the removal and relocation of body organs as disrupting and refiguring identity. In contrast to those who view organs as spare parts or as a mechanical device and were able to ‘own’ their new organ from the outset, these participants tended to take a holistic view of embodied subjectivity. For them, the link between body, self, and world has implications beyond individual wellbeing.

This is the case with regard to the majority of Māori participants, who referred in interviews to a variety of Māori health aspects. Māori health models have inter-related dimensions that can include whānau, spirituality, tinana (physical) and mental (hinengaro) aspects (Durie 1985, 1998; Kara et al. 2011). To support the wellbeing of Māori may involve the whānau, and some Māori participants in Author C's study also spoke of tangi services with whānau for organs that had been replaced. Ngahooro (2010) has also proposed a ceremony to farewell the donated organ, designed to address Māori cultural concerns over bodily integrity.

According to Shildrick et al. (2009) and Vamos (2010) recipients who view the self as embodied may be vulnerable to distress or non-compliance around post-transplant if psycho-social and cultural aspects of the donative process are not anticipated and addressed pre- and post-operatively by health care professionals. Discussing these issues pre-operatively may further improve the consent process by making people aware that such concerns may arise in the future.

Conclusion

This article discusses interview data from sociological research about New Zealanders’ perceptions of organ donation and transplantation. In the article we present data from Pākehā and Māori research participants to examine the salience of gift terminology as a way of describing and making sense of organ transfer procedures for those directly involved in these processes. Building on previous publication from this research (e.g. Shaw 2010; Webb & Shaw 2011), we conclude that gift terminology, even in an ostensibly altruistic setting, does not always reflect people's experiences, especially in terms of accounting for feelings of indebtedness and beliefs about reciprocity and giving back. Drawing on insights from phenomenology we postulate enhanced wellbeing and post-operative recovery for transplant recipients based on discussion about personal beliefs and feelings throughout the course of the organ transfer process. While Thanksgiving services and anonymous thank you letters provide genuine, positive attempts to address psycho-social, spiritual and moral wellbeing, current practices and rituals may need extending. This is particularly the case for those donors, donor family members and transplant recipients who invest meaning in embodiment and shared corporeality as a significant aspect of identity construction. In this article we have shown that concerns can exist for Māori and Pākehā in organ and tissue donation and transplantation around bodily integrity, expressions of gratitude, and identity. How these concerns are addressed is important for public education.

Notes

1. This research was funded by a Royal Society Marsden Grant (07-VUW-028 SOC). The project was granted ethics approval (MEC/08/03/027; AUTEC 08/179; VUW 16628/4/06/09). The names of all research participants from the different data sets referred to in this article have been anonymised.

2. See Shaw (2010, 2011) and Webb & Shaw (2011) for further information about study methods.

3. There has been consultative work and the development of guidelines in the area of Māori donation in an attempt to meet concerns in this area (see Te Puni Kkiri 1999a, 1999b).