Live kidney donation as body work

Introduction

According to 2010 figures New Zealand had 8.7 deceased organ donors per one million people (www.donor.co.nz/). In many countries around the world low deceased donation rates have prompted market-oriented proponents to claim that the existing system of altruism is insufficient to meet the demand for transplantation, and increased incentive to donate is required in order to ‘remedy’ the short supply of organs (Becker, 2006; Saunders, 2012; Trotter, 2008). There is a wide spectrum of views around the permissibility of financial models for organ donation and transplantation, as well as a variety of proposed models. Although medical and philosophical ethicists oppose the unregulated sale of organs, a number of commentators have advocated an ‘ethical market’ (Erin and Harris, 2003) to regulate rather than ban the trade in body parts (Cherry, 2005; Ghods, 2004; Gill and Sade, 2002; Goodwin, 2009; Matas, 2008; Radcliffe-Richards, 1998; Satel, 2008; Savulescu, 2003). Objections to these proposals have been raised by scholars from numerous disciplines (e.g., Cohen, 2002; Hughes, 2009; Scheper-Hughes, 2004, 2007). In the social sciences, opposition to the idea of organ vending in law and policy is historically informed by Richard Titmuss’s ([1970] 1997) seminal research into blood donation. Drawing on comparative research in the United States and United Kingdom, Titmuss expounded the virtues of a gift system for managing blood donation that was voluntary and without remuneration, where blood was distributed according to medical need rather than ability to pay. Titmuss considered public models of service provision superior to market models because they stimulated ethical behaviours motivated by altruism and social duty that were essential for social cohesion and a sense of community. In contrast, he argued that commodity systems produced temporary, non-binding relations between vendors and purchasers and encouraged people to act in instrumental ways that debased human relationships and undermined the dignity of the human body. Since the initial publication of Titmuss’s book in 1970, debates about the management and distribution of blood and other body tissues have remained largely polarised around the dichotomy of gift and commodity, despite transformations in political economy and biomedical and technological innovations in tissue exchange.

Health policy in New Zealand, for example, like that in the United Kingdom, promotes a gift model for managing solid organs. Under the New Zealand Human Tissue Act (2008) it is unlawful to buy and sell organs and tissues. As a signatory to the Declaration of Istanbul on Organ Trafficking and Transplant Tourism (2008), which prohibits organ trafficking, transplant tourism and transplant commercialism, New Zealand has also resolved to protect vulnerable populations in resource-poor countries from exploitation by the organ trade by developing national self-sufficiency in organ donation. This not only entails making provision for organs and tissues to meet patient population needs, such as promoting living organ donation, it means implementing programmes such as diabetes prevention and management plans to prevent organ failure. In New Zealand, such programmes are critical given that the number of people requiring renal replacement therapy rises at a rate of 5% per year on average (Pidgeon, 2012), with much of this growth attributed to the increase in Type II diabetes and improved survival rates for renal patients.

It is also imperative to note that although signatories to the Declaration outlaw unethical organs procurement and transplantation practices they make a distinction between the commercialisation of human tissue, which prohibits a legal open market in organs, and recompense for live donors. This has been the position of the International Transplantation Society since 1985 (Daar, 1998) as outlined in Principle 5 of the WHO Guiding Principles on Human Cell, Tissue and Organ Transplantation (2010) (https://www.tts.org/index.php?option=com_content&view=article&id=729&Itemid=544 (accessed 3 September 2013)). This position was recently endorsed by the (UK) Nuffield Council on Bioethics (2011).

The Nuffield Council Report (2011) aligns with Daar’s (1998) ‘Grey Basket’ model, separating into three categories purchase or outright payment of organs, reward, and recompense for donation. The Nuffield Report defines two forms of permissible recompense: compensation for non-financial losses such as inconvenience, discomfort and time, and reimbursement of direct financial expenses such as taxi and train fares, medical expenses, childcare costs, and lost earnings. Contributors to the Report argue that financial incentives for donation, designed to reward living donors and donor families should be distinguished from disincentives to donate such as recompense. Additionally, Strathern and Wright (2011: 193) note that if a person were already disposed to donate, then a fixed amount to recompense donors designed as an altruistic-focused intervention could be perceived as either ‘token’ or ‘significant’ depending on the perspective and socio-economic positioning of potential recipients.

International protocols around compensation and reimbursement have had limited impact in New Zealand. Australia, which has a reciprocal deceased organ donation arrangement with New Zealand through the ANZICS (Australia and New Zealand Intensive Care Society) agreement, implemented a federal pilot programme to offer living donors a six-week wage of up to AU$3600 in April 2013. In comparison, the modest New Zealand Financial Assistance for Live Organ Donors scheme, established in January 2005, and designed to aid the removal of financial disincentives to donate to assist live kidney (and liver lobe) donation, was reclassified as of February 2012. This WINZ (Work and Income New Zealand) scheme was intended to provide financial support for donors ‘to reduce financial barriers to donation, rather than to provide full compensation for loss of income or act as an incentive’ (http://www.workandincome.govt.nz/individuals/brochures/financial-assistance-for-live-organ-donors.html (accessed 30 December 2012)). It was modelled on the New Zealand sickness benefit scheme, offering a maximum weekly payment for couples of NZ$341.60 and NZ$204.96 for single persons over 25 for up to 12 weeks. 2011 figures show that 13 of New Zealand’s 57 live kidney donors (22.8%) used the scheme. However, as a consequence of the small number of applicants, it was decided that financial assistance for live donors would be processed under ‘Other Special Needs Grants’ (February 2012, Ministry of Social Development, personal communication).

Questions of exploitation loom large in discussions about live kidney donation when money enters the picture; especially where concern for the welfare of the organ donor is the primary focus. Detractors argue, as did Titmuss regarding blood donation, that permitting payment of any kind will undermine the value of altruism and encourage people to do things they would not do otherwise. They fear that payment will degrade altruistic behaviour, turning what is ideally a supererogatory act into an instrumental exchange transaction leading to the exploitation of vulnerable persons, body commodification and the debasement of human dignity.

From the perspective of live kidney donors in jurisdictions where organ commerce is unlawful there are limitations to this account. In short, the view that payment in any form should be prohibited overlooks the social, cultural and situational specificities that compel people to consider live donation, and, by ignoring the care and body work live kidney donation entails, it fails to acknowledge the financial risks and pressures on individuals and families throughout the donation and transplantation process. The recent expansion in significant numbers of living kidney donors, now central to health policy to increase organ supply, has raised concerns by experts in transplantation medicine, psychology, medical ethics, social work and policy about the availability of social support networks and the economic impact on donors pre- and post-operatively. These concerns are addressed in guidelines for the psychosocial evaluation of prospective donors which emphasise the importance of donor suitability, safety and well-being, and are part of the informed consent process (Gordon, 2012; Valapour, 2008). Although there is considerable variation in guidelines between jurisdictions due to different health care and policy contexts, the social impact of transplantation is a pressing issue for government policy in terms of the ethical and financial regulation of donation. In the New Zealand context, as outlined below, there is room for improvement around the disclosure of risks relating to financial and work-related costs for living kidney donors. I suggest the notion of body work is a useful tool for understanding what is at stake here.

The notion of body work, first used in sociology to refer to activities and practices associated with the aesthetic presentation and maintenance of self, has been extended to refer to paid body work or body labour performed on others (Gimlin, 2007; Shilling, 2005; Twigg, 2000). This conception of body work has typically considered non-remunerated caring and gift-giving labour undertaken within families by altruistic individuals, and in the third sector, as outside its remit (Twigg et al., 2011). By contrast, I include living organ donation as a form of body work that cannot simply be reduced to an unconditional act of asymmetric reciprocity by caring individuals, because it is embedded in a complex network of intersubjective relations and institutional practices that are part of a new (bio)economy of exchange. The view taken in this article is that the rhetoric of organ scarcity and promotion of living organ donation has resulted in transferring responsibility for the restructuring of renal replacement therapy costs and their resolution back into the family and into women’s lives particularly. This perspective draws on a history of materialist feminist scholarship informing the reproductive labour debates of the 1970s and 1980s (e.g., Finch and Groves, 1980).

The study

This article is based on qualitative sociological research investigating the lived experience of living kidney donors in New Zealand. It focuses primarily on the short- and long-term consequences and the impact of donation on donors’ social and financial well-being. The aim of the article is to consider, from the perspective of kidney donors, whether compensation or reimbursement for donation is likely to reduce the capacity to act altruistically and diminish donors’ dignity as moral subjects. An additional aim is to expand the conceptual tool kit around perceptions of organ donation as a ‘gift of life’ by including discussion about the social care management and welfare of kidney donors, those they care for, and those who care for them. This entails extending conceptions of organ donation as altruistic to discussions of care that consider organ transfer in sociological terms as body work. The final aim of the article is to produce an account of the views of live kidney donors that will inform guidelines for practice. In so doing, I ask what insights people experientially affected by live kidney donation can offer regarding the role of financial incentives and disincentives to encourage organ donation in New Zealand.

Living organ donation terminology is determined by whether the donor and recipient are related biologically (parent, child, sibling) and whether the donor is directing the donation to a named recipient. Living directed donation (LDD) includes donors who are biologically related as well as emotionally related donors who are not blood relatives (affine, friend). Living non-directed donors (LND) are not related to the recipient biologically or emotionally. They are sometimes referred to as anonymous donors because they give to someone they do not know. Following Matas (2008), I take the view that both LDD and LND act from altruistic motives. Unlike in some jurisdictions, where it is not permitted (see Fortin et al., 2010), in New Zealand LND has been undertaken since 1998. LND are few in number globally. The total number in New Zealand by the end of 2010 stood at only 36 (ODNZ Annual Report, 11. http://www.donor.co.nz/files/odnz_2010_annual_report.pdf (accessed 28 January 2013)).

Participants

Data from in-depth open-ended semi-structured interviews with 19 biologically and emotionally related LDD and seven interviews with LND in two closely linked studies, undertaken between October 2008 and May 2012, form the basis of the article. The discussion is also informed by background interviews with 20 health professionals and organ transplantation experts. Both studies received separate funding and research ethics approval (MEC/08/03/027; MEC/11/EXP/089).

The ages of participants in the study at the time of interview ranged from 26 to 76. The majority of participants were employed full-time, four were self-employed, one was employed part-time, one woman described herself as unemployed, and one woman was a student. The relationship of donors to recipients is detailed in Table 1.

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Table 1.

Relationship of interviewed donor to recipient.

19 related	13 women	10 women to males	5 to sons
			3 to husbands/partners
			2 to brothers
		3 women to females	2 to daughters
			1 to sister-in-law
	6 men	4 men to males	2 to brothers
			1 to son
			1 to nephew
		2 men to females	1 to wife
			1 to sister
6 non-directed	5 women	Unknown	Unknown
	1 man	Unknown	Unknown

As non-directed donation is anonymous in New Zealand, LND do not officially know who received their kidney.

Views about recompense

McCune (2008) makes the point that financial concerns produce anxiety for donors and can significantly contribute to stress during post-operative recuperation. Such concerns not only impact the welfare of donors, their immediate families, extended kin, and friendship networks, they can also limit opportunities to donate. The fact that donors receive emotional, financial, moral and psychological support from friends and families, as well as financial support from employers is often obscured in dominant discourse around organ donors’ experience. Yet, as McCune notes, it is governments that receive ‘the greatest financial benefit from living kidney donation’ (2008: 68). In the present study LND were aware of the role their donation played in meeting the health needs of fellow citizens. As LNDM1 observed, ‘the recipient gets the kidney, which hopefully will give them a better quality of life for many years and the government has one less person on dialysis treatment’.

Donors’ views about payment

Study participants agreed that recompense in the form of compensation for time off work and reimbursement for expenses should be permitted. They objected to payment for organs as this would lead to the commercialisation of kidneys as exchange objects and debase organ donation as an altruistic act.

It is also important to note that LND, as a group, are careful to declare opposition to the commodification of body parts in discussions about their donative experiences. This stems from the underlying suspicion articulated by health professionals regarding non-directed donors’ motivations to donate to a stranger and the accompanying claim that these people could be psychologically unbalanced or surreptitiously doing it for money. LND therefore justify their motivations in sync with ideas about social solidarity as a way of expressing good citizenship. At the same time, they are careful to reiterate instrumental reasons for donation, such as only needing one kidney to live and not wanting to ‘waste’ their kidneys because they have a limited lifespan. They consequently downplay metaphysical or existential corporeal connection to others in pre-operative conversations with nephrologists and psychologists, in order to bring their accounts into line with dominant medical and bioethical discourses around altruism as a voluntary choice made deliberatively by an autonomous individual (Shaw, under revision).

In contrast, LDD have the liberty of being more outspoken in their views about recompense and payment, despite strongly objecting to what they all called the ‘black market’ in organ exchange. LDDF11, for example, questioned why people should give up six or seven weeks of salary to donate a kidney without being reimbursed, stating a clear distinction between compensation and payment. In her view, ‘compensating people for lost income [is] not providing a financial incentive’, it is ‘removing a financial disincentive’, and ‘payment is a step further on.’

All but four donors felt uneasy about the proposal, made by a well-known New Zealand transplantation specialist, to pay a NZ$5000 lump sum for donating an organ (‘Kidney For Sale: One Careful Owner’, North & South, December 2013, pp. 62–69). Confirming Strathern and Wright’s (2011) observation, there was a difference of opinion about whether NZ$5000 was ‘too much’ (LNDM1) money or not much at all (LDDF6). LDDF4 stated:

I wouldn’t have thought [a $5000 lump sum] would encourage them to donate, put it that way. If you’re going to donate a kidney, money is not what you’re thinking about. You’re thinking about your relationship with the individual that you’re going to give to, and why you’re going to do it. […] If they’re not going to donate, they’re not going to donate, no matter how much you were to offer or expect to receive later. No, by the time you’ve been through all those tests and some were reasonably rigorous […] there are lot of times where you can change your mind. The process is not ‘okay we’ll book in tomorrow’; it’s a long process, which it probably needs to be. No, I wouldn’t think that the people would be persuaded. If they were wavering that’s not going to push them over.

All participants, except LDDF14 and her husband who suffered financial hardship, stressed that their own financial circumstances enabled them to freely consider donating as an option, but that ‘money shouldn’t be a barrier for people’ (LNDF4). They speculated that economically disadvantaged people would be constrained to act altruistically or exercise benevolence as donors, to care for family members and others. One LND said her socio-economic positioning put her in a ‘vastly different situation from a factory worker’. LDDM3 concurred, stating lower socio-economic groups need to be recompensed for donation. As he put it:

I’m going to give one to my wife. I haven’t got a very good job. She’s going to be terrified that the whole family is going to suffer by the fact that I’m not working, and if I’m buggered for two or three months it’s going to be a disaster. So, that’s going to cause tremendous tension and problems within that family. So, yes, there should be recompense.

Participants in the study did not pinpoint lack of money as a deterrent in their own cases. This does not mean that study participants were not critical, to some extent, of the support offered to them between the period of the donation operation and the recovery period.

Discussion: Care and body work

Few studies to date (see Ådahl, 2012; Sothern and Dickinson, 2011; Zeiler, 2009) have discussed organ donation through the lens of caring activities or carework. No discussion thus far has considered live kidney donation as body work. In sociological research (Gimlin, 2007; Shilling, 2005; Twigg, 2000; Twigg et al., 2011; Wolkowitz, 2002, 2006) the term body work has been ‘applied to the work that individuals undertake on their own bodies’, and to ‘paid work done on the bodies of others who thus become the objects of the worker’s labour’ (Twigg, 2000: 389). Expanding this definition, the concept of body work is transferable to live kidney exchange from donors to directed and non-directed recipients because the donative act not only is motivated by altruism, reciprocity and solidarity, but, like paid body work, it also represents a form of working on the body-self for the self and for the other. Kidney donation is work on the body-self for the self because the donor is constituted as a moral subject by virtue of the donative act, and it is work on the body-self for the other because the labour process involved in kidney donation is altruistic.

Organ donation clearly falls under the remit of carework as body work, as Twigg (2000) refers to it, due to the interventions of a hierarchy of health practitioners on the actual bodies of live kidney donors. Body work further pertains to the activities of organ donors themselves and their non-remunerated caregivers; a network of invisible others, typically made up of family members and friends, who help live donors recover and heal post-operatively. In addition, live kidney donors in families often engage in reciprocal carework for the recipients of their organs post-surgery. In many families, donors are frequently key persons who have looked after the transplant recipient as a dialysis patient.

In their definition of body work Twigg et al. (2011: 3) exclude work that falls ‘outside the employment nexus’, arguing that the social relations of informal care and its uncommodified character set it apart. Although organ donation is assiduously separated from commerce in most jurisdictions, there is a case for treating various aspects of the carework of organ donation as body work for several reasons. Despite its being a one-shot institutionalised altruistic act (Healy, 2004), the complexity of care and body work that kidney donation necessitates crosses the public/private divide in ways similar to unpaid domestic caring labour. Since the beginning of the neoliberal economic reforms of the 1980s in New Zealand, the de-institutionalisation of formal care as a feature of health and welfare policies has intensified the work families undertake in the informal sector. Techno-medical innovation and health care reform in the context of neoliberalism has involved shorter hospital stays and faster discharges, all of which has shifted responsibilities for care on to individuals and families who have ended up paying in energy, resources, and time for supplies and services that would have once been funded by health care systems. A consequence of restructuring the home as the site of this kind of work and its outsourcing to family members, is the transformation of mundane bodily labour on family members’ bodies into ‘caring’ work; work done for love, and defined in terms of a mother’s or father’s caring role or duty. The burden of this transference of responsibility to the home and the loading of such work with emotional content due to its association with privatised intrafamilial ties has rested mainly with women, who are increasingly negotiated into caring for family members. The support and care persons for non-directed donors in the present study, for example, were all mothers, sisters and/or female friends.

Like care and body work generally, kidney donation is gendered, differentially performed by men and women. International research indicates a gender disparity for organ donation and a gender disparity for kidney donation in particular (Scheper-Hughes, 2007). In the middle of the last decade estimates showed that women accounted for two thirds of all organ donations, and that number increased if only living donation (as opposed to deceased donation) was taken into account (Steinman, 2006: 246). There are more women who are live donors than men internationally, and more men than women receive organs for transplantation. In the only other interview study of LND following nephrectomy in New Zealand (Tong et al., 2012b), 11 of the 18 non-directed donors were women and seven were men (61% cf. 39%). Data from the present study also show more women than men donated kidneys and more directed donors gave kidneys to men than to women. We cannot generalise from the small sample of the present study, but it is of ethical concern, as Zeiler says (2009) if the gender bias in live kidney donation is explained by traditional feminine roles emphasising women’s obligation to care for sick family members and assumptions around feminine identity and self-sacrifice.

Evidence indicates that kidney donation can result in improved self-esteem for LND and LDD, as well as offering additional services to the community such as public appearances promoting live donation and institutional support for others going through similar experiences. At the same time, a lot of work, much of it mundane goes unacknowledged in the process of organ donation. This is work that donors frequently feel ambivalent about. We overlook important aspects of this work if we confine our examination of donor motivations to gift-giving as a ‘special realm of value’, to borrow Twigg’s (2000: 393) phrasing, involving qualities such as care and love of family members in the case of directed donors, or elevated metaphysical ideas about shared intercorporeality and body community in the case of non-directed donors.

In their efforts to make body work visible in the health and social care arenas, Twigg et al. (2011) argue (see also Wolkowitz, 2006: 149) that preoccupation with ‘intimate labour’ as the key component of carework, separate from physical care, inadvertently downplays and dematerialises its bodily aspects. This observation is pertinent to live kidney donation. For instance, although participants in the linked studies impart how the pre- and post-operative emotional labour involved in kidney donation is often invested with psychological and metaphysical significance, they also express caution about elevating kidney donation to a lofty ‘feeling’ or spiritual level. In a conversation thread about the salience of kidney donation as altruistic, LDDF11, who gave a kidney to her partner said:

On the one hand I think it was a very emotional thing for us to do, but on the other hand, it was a terribly practical medical necessity, and I think there’s an awful lot more that can be done to encourage it, and I think that the less mystification around it the better really.

This participant’s quotation highlights how privileging symbolic connection over physical well-being risks reproducing the age-old distinction between ‘spiritual’ and ‘menial’ care. The danger is that sentimentalising the donative act as unconditional love conceals the bodily value of the work required to prepare for and recover from organ donation. As such it overlooks the importance of seemingly trivial but laborious and physically demanding tasks that sociologists call body work, or more precisely, what Shilling refers to as ‘reproductive body work’ (2005: 74, emphasis in original). These tasks include quotidian activities like lifting and carrying boxes, doing housework, providing emotional succour, and washing and caring for donors’ bodies.

Organ donation is an exceptional moral act and we should be mindful of its routinisation as a modern medical and technological event, as Fox (1996) is at pains to point out. At the same time, failure to acknowledge the body work surrounding kidney donation by objectifying the kidney itself as the gift and end point in the organ transfer process further naturalises ideologies of caring and body work that must be undertaken in the informal sector, eliding a significant hidden subsidy to the health economy. Seen in this light, not to reimburse or compensate kidney donors for their generosity or solidarity seems parsimonious.

Certainly participants in the present study agreed that living donors should not be worse off, physically, emotionally and financially as a result of their donative acts. While they were aware of the health dollars they were saving the New Zealand government and the health system, no study participant thought recompense in the form outlined by the Nuffield Council Report, Daar (1998), or the WHO would function as an inducement for people who would not otherwise donate for altruistic reasons. With two exceptions, participants were reluctant to go further than recompense to endorse a regulated market of compensation to include payment in recognition of what the donor has done. They did not always fully articulate their reasons for holding this view but as the research interview was probably the first time the subject had been broached with participants this is understandable.

Participants also recognised that inequality of access to health care could play a part in people’s donative capabilities and their capacity to absorb costs associated with donation and transplantation processes post-operatively. This is a very real concern, as live kidney donation is increasingly promoted as a solution to the ‘organ shortage’. As a social justice issue it is significant in New Zealand because Māori and Pacific peoples, over-represented in the lowest socio-economic groups, are disproportionately burdened by chronic kidney disease and end stage renal failure. 2008 figures, for example, showed that 31% of those starting dialysis were Māori and 17% Pacific, even though they respectively make up 14% and 7% of the total New Zealand population of 4.2 million people.

In order to recognise the value of organ donation as contributing to the economic activity of the health and social care sector I suggest we add to our understanding of organ transfer as altruistic and part of a social logic of gift-giving-and-receiving, the idea that it is embedded in a network of caring relationships that entail body work. Introducing this notion into discussion about recompense for live kidney donation may help to unlock the ideological impasse currently polarising the debate between altruism and commerce. The conflation of macro level arguments against organ commercialisation with financial reimbursement or compensation for donative acts does not help individuals and families who make voluntary or compelling decisions about donation as an act of care for practical and moral reasons. Recompense for expenses for living donors directly related to giving a kidney should be supported on the grounds that donors should not be asked or expected to make financial sacrifices or take risks over and above that required to help save or improve the quality of life of another human being. There should be no discernible positive or negative impact on the donor’s circumstances beyond the donation operation itself. Donors should neither profit from nor be disadvantaged by their corporeal generosity; rather, their life situation post-operatively should be neutral with respect to their actions. Reimbursement of foreseeable and unforeseeable costs related to living kidney donation pre- and post-operatively in this way would not vitiate the altruistic nature of the gift-giving process.